Select Page
The Calendar

The Calendar

December 27, 2023 | by Jeri Gore, Editor-in-Chief of the IAES Blog

Each year since I have had the honor of having this job as Editor-in-Chief for IAES we have created a calendar. This calendar can be used and shared by all administrators at IAES to note important information that may be coming due. We use it to note events such as seminar schedules, publication dates, anniversary dates of import, dates to have jobs and other projects completed, and anything any of us need to remember and/or have all of us keep in mind regarding what is coming up.

 Creating a general calendar is something I’ve done for my family for years. Before we could share our calendars across electronic or social media platforms, we had a family wall calendar. I have kept those calendars as keepsakes. When I look back through them, they serve as a journal of sorts. I have a wonderful husband, four sons, and pets, and am blessed with amazing family and friends. We used our yearly family calendar to mark everything, so each family member would know what was happening daily. Sometimes when I look back and peruse these calendars such as the year our twins were born, I have NO idea how my husband and I ever had time to address basic needs such as sleeping and eating.

In 2019 I was diagnosed with AE, one of our sons was married and we moved. The 2019 Gore family calendar is heavily peppered with wedding-related meetings, fun events, house-buying, moving-related appointments, doctor’s appointments, and hospital stays.  It was a year of big ups and big downs: celebrations and tears.  Some folks love to write in journals and some document via pictures and videos. I journaled, in a way, via our annual Gore family calendar. Although my intent was not always for that purpose, at some point our family calendar transformed into a living journal that detailed the story of our lives. I love to occasionally look through them recounting the memories.

2023 is quickly winding into 2024 which has turned my direction to actively creating the framework for the IAES 2024 calendar. I am starting to look towards what 2024 will bring IAES and AE research in general. The webinars and events that will encompass and fill February/AE Awareness month are some of the biggest names in the field of Autoimmune Encephalitis, a star-studded line-up.  The art show and annual awareness video. I wonder what new information will come out in 2024 that we can present to all of you on the IAES website, newsletters, and blogs?

As I approach the 5-year anniversary of my AE diagnosis and I have the honor to look back on the IAES calendars of the past few years I am amazed. In a word, all I can say is WOW! The amount of work IAES has accomplished is breathtaking. I am constantly in awe of the folks I get to call my IAES family, the work they accomplish and the lives they touch! The amount of research into AE, therapies for AE, awareness of AE, and clinical studies for AE and the rate that all of this has sped up is awe-inspiring. There is still a mighty long way to go for sure. We still have many mountains to climb regarding AE awareness, treatment options, and ongoing rehabilitative therapies. But, for all of us thousands of AE Warriors, caregivers, and clinicians, I believe our future is very bright.

I wish you all a happy healthy New Year! May your 2024 calendars be positive, and bright, and may the mountains you must climb this year be less difficult!

 The best is yet to come!

 

Click here or the image below to subscribe to our mailing list:

subscribe - The Calendar

Your generous Donations allow IAES to continue our important work and save lives! 

seal - The Calendar

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - The Calendar

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - The Calendar 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

The 12 Daze of Christmas

The 12 Daze of Christmas

December 13, 2023 | by Jeri Gore, Editor-in-Chief of the IAES Blog; Sung by Barbara Layt Vujaklija 

Happy Holidays from the entire staff at IAES!

To all our members all over the world and in whatever manner you celebrate we send our love, we wish you happiness and good health in the coming year!

We hope you enjoy this song and video as much as I do! When I first heard it, I laughed so hard my stomach hurt. The Twelve Days of Christmas has always been a favorite Christmas song of mine and to hear Barbara’s AE spoof on the original is brilliant and fun! IAES first released this back in 2015 when IAES was in its infancy.  Barb, our very first volunteer, and Tabitha Orth, our founder and president, wrote the lyrics.  Barb sang. How she did it without laughing is beyond me, but I am glad she did because we can all enjoy her merry take on a fun song for years and years.

I thought it appropriate to publish this video/song at this time in honor of the season as well as the person singing. Barbara is retiring from her post at IAES after years and countless hours spent volunteering on behalf of every single one of us. We have all been touched by Barb or the programs she helped to start. As stated above, she was the very first volunteer even before IAES became an official nonprofit organization. All new members have been greeted by the folks she helped train through the membership committee which she began. She and her team have guided over six thousand inquiries for new membership and helped direct them to the people and programs that best benefit each individual. Barb started the IAES blog and The Herdnewsletter. Both publications are unprecedented in the AE community. As a trained nurse and AE Warrior, herself, Barb has helped countless members and their families throughout every aspect of their AE diagnoses and journey. Barb’s knowledge, sense of humor, ability to remain calm in a crisis, and positive/can-do attitude have helped IAES become the organization it is today and will be in the future.

When I took over the IAES blog three years ago and became editor-in-chief I had mighty big shoes to fill. I was nervous! Barb was patient, helped guide me in an area in which I had no experience and always made me feel as though it would all be ok. To say I admire, and respect Barb is a complete understatement. It is because of Barb and folks like her that many of us with AE and our caregivers have had the help and guidance we have needed, and AE has gotten to the point of awareness it is today.  I, for one, will be forever grateful.

We hope you enjoy this song/video and giggle as much as I did! Barb, thank you for all you have done and for giving us your time, patience, and your singing voice

Click here or the image below to subscribe to our mailing list:

subscribe - The 12 Daze of Christmas

Your generous Donations allow IAES to continue our important work and save lives! 

seal - The 12 Daze of Christmas

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - The 12 Daze of Christmas

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - The 12 Daze of Christmas 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

5 Ways to Answer “How Can I Help”

5 Ways to Answer “How Can I Help”


November 22, 2023 |  By Michelle Seitzer of Caregiving Advice

A message from IAES Blog staff:

In the US, Thanksgiving Day and week are upon us. And we have much to be thankful for. For those within the AE community, we cannot thank all those that care for us, in any capacity, enough! As we round out Caregiver Awareness month and head into a holiday season of joy, peace, and grace, may we all continue to be aware and be thankful for all we have been given. 

Michelle Seitzer founder of Caregiving Advice has graciously offered to let us share her article regarding ways to help those that care for us the most. We hope you find this as informative as we have!

She offers wonderful tips, and many ways caregivers can be cared for!!!

——-

Want to help a caregiver whose life is busy, busy, busy? Here’s how!

During this week’s Coffee Chat—our brand new virtual support group that takes place Mondays at 11ET on Instagram Live—we talked about what kind of help is actually helpful for caregivers, and why it’s so hard to get it.

We first posted this article in February 2020, right before the world shut down. How times have changed since then! But the advice we shared here? It hasn’t changed at all. Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.

Because it feels like more work.

When caregivers hear these age-old phrases—“How can I help?” or “Let me know if I can do anything!”—our initial internal reaction is STRESS. Because the thought of coming up with helpful tasks feels like extra work, and extra work is something no caregiver wants. We want someone to lighten our load, not add to it!

Now don’t misunderstand: We are generally thankful for the offers. We appreciate that you see our need for help and want to provide it. But we need you to make it a little easier for us. And sometimes, we just need a little more time to think about it! As caregivers, we need to say that. “Thanks for your offer, can I get back to you with some ideas? And can you check in with me in a week if I forget?”

So caregivers, next time someone asks you *THE QUESTION,* refer to these 5 simple suggestions. And if you’re reading this as a person who wants to help a caregiver, thank you for your willingness; we hope you find these ideas helpful!

#1: Bring us a meal.

An oldie but a goodie: make us a meal! Or make a couple of meals for me to stack in my freezer, or send gift cards for GrubHub, UberEATS, or our favorite local pizzeria. Planning meals is often the last thing we want to squeeze into our busy day, which leads to lots of unhealthy dinners like frozen pizzas—or even worse, skipping meals altogether.

#2: Come visit us.

Screen Shot 2021 07 14 at 9.37.57 AM - 5 Ways to Answer "How Can I Help"

Offer to sit with our caree for a few hours while I run errands. Don’t feel comfortable with that? Just stop by for a visit when I’m there (if we’re all up for visitors that day)! Caregiving can be extremely lonely, so it’s a huge help to see friendly faces and welcome visitors! It’s equally as refreshing to have someone take over so I can get a few items checked off my to-do list.

#3: Fill our (gas) tanks.

If you really want to do something of monetary value for us, a gas gift card is always appreciated! There’s a lot of driving involved in caregiving, and it adds up. And financial pressures add to our already heavy caregiving load.

#4: Bring us groceries (treats included).

Screen Shot 2021 07 14 at 9.35.30 AM - 5 Ways to Answer "How Can I Help"

With online shopping now available in almost all areas—and with a variety of pick-up, drive-up or delivery options—this is an easy way to help that makes a HUGE difference!

Think of how much work it is to grocery shop…

It starts with planning: thinking about meals and snacks, then assessing what you need, taking note of what you’ve run out of, and jotting it down.

Then you have to figure out when to go, and depending on your caregiving situation, this can be a logistical challenge. Who can stay with your caree, if they need supervision? Or do you bring the person along, which comes with its own challenges? Some caregivers opt to shop at night when a spouse, partner, or child can stay home with the person you care for—but that often means shopping on tired legs and with a weary mind.

Now that you’ve figured out when to go, you have to drive there, go inside, fill your cart, empty your cart on the belt, load the bags in your cart, bring them out to your car, load them in your car, drive home, bring the bags into the house, then put the groceries away.

And then, of course, make a list of the things you forgot, because that inevitably happens, right?!

When you break down all the steps, you realize how much work is involved—and why it would be SUCH a help for someone to step in on this necessary life activity. (It also makes the case for paying the nominal delivery fee for those services, if you ask me!)

#5: Update others for us.

Offer to update others when something big happens. This one is a little tricky in terms of privacy, but it can still be super helpful.

The key word here is “offer.” Never give updates on my caregiving life without checking with me first. But if you know something big just happened (new diagnosis, a fall, change of living situation or school depending on age, a death or similar big loss/change in the family, etc.), ask me if I could help with letting others know.

Who are those “others?” Those are the people who would love to hear the latest on my caree but don’t necessarily need to hear it from me directly—i.e. my pastor, neighbors, boss/coworkers, friends I haven’t talked to in a while, to name a few.

It’s emotionally exhausting to repeat the same information — especially bad news — over and over again, so having someone offer to take on that task provides a huge sense of relief.

 

And there you have it! Five simple ways to help a caregiver whose life is busy, busy, busy. Pass this on to others who are looking for ways they can help, and let us know if you’d add anything to this list by commenting below. 

 

Click here or the image below to subscribe to our mailing list:

subscribe - 5 Ways to Answer "How Can I Help"

Your generous Donations allow IAES to continue our important work and save lives! 

seal - 5 Ways to Answer "How Can I Help"

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - 5 Ways to Answer "How Can I Help"

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - 5 Ways to Answer "How Can I Help" 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

Caregiver’s guide to self care & avoiding caregiver burnout

Caregiver’s guide to self care & avoiding caregiver burnout


November 8, 2023 |  By the SingleCare Team; medically reviewed by Gerardo Sison, Pharm.D.

November is Caregiver Awareness month! The staff and members of IAES celebrate, love, depend on and, at times, could not get by without those that have cared for us! To say we appreciate you is an understatement. So, this month we celebrate ALL of you wholeheartedly!

Thank you all!

We are honored to share with you a wonderful article by The SingleCare Team and thank them for allowing us this opportunity!

——-

Learn risk factors, signs of burnout, and how to reduce the danger of caregiver burnout

A caregiver is anyone who assumes a significant level of responsibility for another person. This could be a family member, friend, or home healthcare worker. Caregivers demonstrate selflessness, commitment, and duty every day. But they also take on emotional and physical burdens that can become overwhelming.

What is caregiver burnout?

Caregiver burnout is a state of total exhaustion brought about by the emotional, physical, and mental toll of assuming responsibility for another person’s needs.

How does caregiver burnout start?

In most cases, caregiver burnout begins with emotional exhaustion. The stress and burden of providing for someone’s critical needs can exhaust a person’s ability to cope. Emotions like anger, sadness, and fear can be harder to control than usual.

caregiver burnout 440x500 - Caregiver’s guide to self care & avoiding caregiver burnout

Physical exhaustion often follows. Caregiving often requires new physical demands and usually leads to a reduction in other physical activities like exercise. One person may feel lethargic because they no longer go on their morning walk. Another person may have sore muscles because they have to bathe and clothe someone else, or sleep somewhere unfamiliar.

The combination of emotional and physical exhaustion can lead to mental exhaustion. A caregiver may begin making simple mistakes like forgetting appointments or leaving a key ingredient out of a favorite recipe. Restful sleep may be difficult, and a caregiver may lack motivation for social interaction. This is when exhaustion has reached the burnout stage.

If caregiver burnout is not addressed, it can lead to caregiver depression—a dangerous situation for the caregiver and the person to whom they are giving care. Depression is often characterized by feelings of worthlessness, sadness, or irritation, which can sometimes lead to chronic negative thoughts of hurting themselves or others.

If you or a loved one is experiencing severe depression or suicidal thoughts and behaviors, seek help from a healthcare provider or emergency room immediately. You can also call the National Suicide Prevention Lifeline at 800-273-TALK (8255).

Why is caregiving so exhausting?

Caregiving is exhausting because of the time and energy it requires. When someone you love can’t entirely fend for themselves, you want to help them. But when you are preparing meals, sorting out their financial situation, or helping them use the bathroom, you are using up energy and hours normally devoted to your own well-being.

In the end, the exhaustion often comes from losing the ability to do things that you enjoy and that make you, you.

What are the risk factors of caregiver burnout?

Not all caregivers get caregiver burnout. But among those that do, researchers have identified certain risk factors that seem to make caregivers more likely to suffer from burnout. Not everyone who has these risk factors will experience burnout, and people who don’t have any of these factors may experience burnout anyway.

Still, it is worth reviewing these risk factors and being aware of any that apply to you.

  • Physically demanding tasks (i.e., lifting someone out of a bathtub)
  • Taking care of someone that has severe behavior problems (i.e., dementia), not only physical ones
  • Financial difficulties
  • Living with the person you’re caring for
  • Lacking friends or a support network
  • A high percentage of time or long duration spent as a caretaker
  • History of substance abuse

What are the signs of caregiver burnout?

Certain signs may indicate total exhaustion or caregiver burnout. If you are a caregiver or know someone who is a caregiver, look for the following signs.

warning signs burnoiut 436x500 - Caregiver’s guide to self care & avoiding caregiver burnout

  • Feeling overwhelmed
  • Feeling constantly worried
  • Not getting enough sleep, or sleeping too much
  • Gaining or losing weight
  • Feeling angry at the person you’re caring for
  • Feeling easily irritated
  • Avoiding friends and family
  • Feeling sad or hopeless
  • Having frequent body pains, such as headaches
  • Increasing the use of alcohol, drugs, or prescription medications
  • Getting sick more often

Caregivers experiencing any of these symptoms should speak to their doctor.

Measuring caregiver stress and burnout

The Zarit Burden Interview is the most widely used diagnostic tool for identifying caregiver burden.

To determine whether you are experiencing excessive caregiver stress, consider taking this Caregiver Health Self Assessment Questionnaire that was developed by the American Medical Association.

How to avoid caregiver burnout

You now have an understanding of what caregiver burnout is, how to recognize it, and who is most likely to get it. Here are 12 proven methods of avoiding burnout.

1. Make sure you get breaks for yourself

There’s no “pause button” for caretaking. Every caregiver may have felt the urge to simply walk away, but they understand that doing so could be catastrophic for the person who is relying on them. You don’t want to let it get to that point.

That’s why implementing breaks into your daily routine is so important. Short breaks can have a hugely positive impact on your mental outlook.

In some cases, the person you are taking care of can manage on their own for a few hours, so you can get away. Others may at least be able to entertain themselves safely while you are in another room.

If you are helping someone who needs constant supervision, you’ll have to be proactive about scheduling breaks. This could mean drafting a neighbor, friend, or family member to help periodically. Or it could mean hiring a home healthcare worker to stop in a few days per week.

We’ve already learned that a high percentage of time spent as a caregiver is a risk factor for burnout. Do everything you can to ensure you have time to yourself to relax and recharge. It’s the best thing for you and for the person you’re caring for.

2. Use tools that make sharing updates simpler

A primary caregiver isn’t only a healthcare worker, they’re a reporter, too. Close family and friends will expect updates on topics like symptoms, prognosis, how their medication is working, what the person is eating, and more.

Individual calls or emails are nice, but time-consuming. When a caregiver isn’t able to provide updates as often as they’d like, they can feel guilty about it which adds to their burden.

Tools like CaringBridge, PostHope, or MyLifeLine make communication easier. These sites let you post updates simultaneously—with controls to protect your loved one’s privacy.

A single update shared with everyone also reduces the risk of miscommunication. Everyone will have the same information, so they don’t feel left out.

3. Use online resources

Every caregiver should have a device with internet access. Critical advice and important resources can often be just a few clicks away.

One of many examples is Eldercare Locator. This free resource site, produced by the U.S. Department of Health and Human Services, has a clean, readable design and trustworthy links. In just a few clicks, you can connect with insurance, transportation, and home care resources.

Many other online resources for caregivers are worth consulting, such as online support groups and local home health organizations.

4. Join a support group

Participating in a support group is one of the best ways that a caregiver can use their limited free time. Caregiving can be isolating and frustrating. On the most basic level, a support group reminds caregivers that there are others facing the same challenges.

But on a deeper level, a support group can help provide guidance that’s based on experience. And a caregiver can feel the satisfaction and catharsis of helping others by sharing their successes and failures with other like-minded individuals.

Bonding over these shared experiences often leads to friendship. As supportive as family and friends can be, they can only sympathize with what you’re going through. A fellow caregiver can share the burden and support you, like a coworker or teammate.

5. Take a self-assessment test regularly

Caregiver burnout doesn’t happen all at once. Emotional, physical, and mental exhaustion accumulates over time.

You stand a better chance of avoiding burnout if you track benchmarks in your mental health. Taking a self-assessment test regularly (say, once a month) will give you a clearer view of how well you are coping.

Self-assessments ask basic questions about your feelings and your physical health. They shouldn’t take more than 10 to 15 minutes. We recommend the Caregiver Health Self Assessment Questionnaire, which was developed by the American Medical Association.

This small-time investment could save you the consequences of burnout.

6. Maintain positive relationships with other friends and family

When a loved one is going through a health crisis, everyone wants to help. Sometimes the best help is the simplest: Reaching out to a friend or family member.

Caregivers need a sense of normalcy that can often be obtained by going on a walk with a former coworker, having brunch with old friends, or enjoying a night at the bowling alley.

Friends and family may feel that they have to do extra, or they may feel hesitant about trying to contact you. Try to maintain a schedule with friends and family members, either by having a phone call every few months or arranging lunch meetups once a week.

7. Set boundaries

One of the biggest changes when you become a caregiver is making decisions for someone else. And the people who also love that person may not always agree with the decisions you make.

You can’t make everyone happy, and being second guessed adds to your burden. Family and friends who want to provide help may do so in a way that interrupts your routine.

So set clear boundaries about things like who should attend doctor visits, when people should visit, and the types of assistance you actually need.

8. Set health goals for yourself, including mental health

The emotional burden of caregiving can cause you to neglect your physical and mental health.

Positive behaviors like exercise and meditation become important when you are under emotional strain. They are an effective way to calm your racing thoughts.

Give yourself achievable goals for activities like these. Phone apps can help by providing daily reminders and preset programs that last 10 to 30 minutes.

9. Set realistic goals for your caregiving and ask for help when you need it

Too many caregiving situations start in crisis mode and stay there. That’s a sure path to caregiver burnout.

Early on, work with your doctor to identify a realistic level of caretaking. Think about your loved one’s current and future needs and whether you will be able to provide them.

For example, someone with a progressive, debilitating disease may be able to function normally now, but what happens when they need help getting in and out of the bathtub?

What types of care are you comfortable giving? Could you give shots, or monitor IV drips? What about driving to pick up medications or necessities like groceries with them in the car?

Think about what will go into caretaking in your unique situation, and set realistic goals for what you can do.

Overextending yourself can lead to burnout (or a dangerous situation) for the person you’re caring for.

10. Talk to a professional, including a therapist or social worker

Becoming a caregiver is a time of stress and even shock. These are times when talk therapy can be extremely comforting and critical to our ability to cope.

Family and friends can be a sounding board, but they also have a close relationship with the person you’re caring for. That makes it hard to honestly discuss feelings of shame, guilt, or anger—feelings that are common and valid.

Speaking to a third party gives you the freedom to express yourself, put certain feelings out into the open, and work on strategies for coping with them.

11. Be realistic about your loved one’s disease

Another reason to seek advice from a third party is to be able to honestly discuss your loved one’s path to recovery—or their lack of one.

For dementia patients, sadly, there is no cure. And doctors can’t say for sure how fast the disease will take hold.

Acceptance can be the hardest part of dealing with certain diseases. We want to believe our loved ones will beat the odds. Thinking realistically about what the future holds can help us balance our hopes with the practical requirements of home care.

12. Develop coping strategies that work for you

Every caregiving situation is different and so is every caregiver.

Some people may decide to take time for solitary walks before deciding that what they really want is to join a support group.

Coping on a daily basis can be a real challenge. Try to identify the stressful parts of your day and how you could alleviate that stress. Maybe you’d benefit from getting housekeeping help or a meal delivery service. It doesn’t have to be forever, but keeping your head above water for the health of you and the person you’re caring for has to be the top priority.

Self-care is part of caregiving

Caregiving can be a shock to the system. Our instinct is to help our loved one, no matter the cost to ourselves. But as the days, weeks, and months go by, we run out of energy.

The most important thing for caregivers to remember is this: Successful caregiving includes caring for yourself.

 

Click here or the image below to subscribe to our mailing list:

subscribe - Caregiver’s guide to self care & avoiding caregiver burnout

Your generous Donations allow IAES to continue our important work and save lives! 

seal - Caregiver’s guide to self care & avoiding caregiver burnout

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Caregiver’s guide to self care & avoiding caregiver burnout

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Caregiver’s guide to self care & avoiding caregiver burnout 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Holiday Gift Guide for Those with Neurological Issues

Holiday Gift Guide for Those with Neurological Issues


December 14, 2022 | 
by Sarah Watts. Illustration by Jeannie Phan. Republished with permission from Brain & Life Magazine 

A message from IAES Blog staff:

The holidays are a busy time for everyone. For those of us with neurological issues and for those that care for us, this busyness may seem overwhelming at times. In 2021 Brain & Life magazine published an article that may make one part of the holiday season a small bit easier and much more fun.  They published an article that provides a fun and useful list of gifts for those with neurological issues. It is our sincere hope you find this as helpful as we have! 

——-

Thoughtful Holiday Gifts for People with Neurologic Conditions

Our guide makes gift-giving a cinch—and fun.

 

If you ask John Andrejack, a 53-year-old college professor from New York City, what he wants for the holidays, a massage is at the top of his list. It’s the kind of gift that’s personal, he says, but also practical: It helps with the muscle aches that are a symptom of his Parkinson’s disease.

Diagnosed at the age of 47, Andrejack has had several holiday seasons when friends and family wanted to give him something both meaningful to his personality and appropriate for his condition, but it’s not easy. This is mainly, Andrejack says, because Parkinson’s disease and other neurologic conditions such as stroke, traumatic brain injury, tremor, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS) vary so much from person to person.

“What might be really useful for someone might not necessarily be wanted by someone else,” says Erin Cecchi, MSW, LCSW, senior program coordinator and clinical social worker at Northwestern University’s Parkinson’s Disease and Movement Disorders Center in Chicago.

But the possibilities are expanding. As the number of Americans living with a neurologic disease increases (that number is now 25 million, according to a report in Annals of Neurology), companies are responding with suitable products and services.

Here are some gift ideas from people who know: neurologists on the editorial board of Brain & Life, physical and occupational therapists, and patients like Andrejack.

House Icon 300x295 - Holiday Gift Guide for Those with Neurological Issues

Gifts for the Home

Satin sheets.
Soft, slippery sheets make it easier to move around in and get out of bed. (amazon.com, bedbathandbeyond.com, sheex.com, target.com, thecompanystore.com, walmart.com)

Weighted blankets.
These can deflect anxiety and stress. “The heavy feeling of a weighted blanket can be calming and help a person feel safe and comfortable,” says Cecchi. (amazon.com, gravityblankets.com, sensacalm.com, sleepnumber.com, walmart.com, yaasa.com)

Heated blankets or vests.
“Many patients with neurologic conditions have trouble regulating their temperature,” says JoEllyn Fox, DPT, lead therapist at the Dan Aaron Parkinson’s Rehabilitation Center at the Perelman School of Medicine in Philadelphia. This is especially true for people with MS, ALS, and Parkinson’s disease. Blankets and vests help stabilize body temperature. (amazon.com, ororowear.com, walmart.com)

Support wedges.
“Typically, people with Parkinson’s disease have a stooped or forward-flex posture that puts strain on their muscles,” says Chelsea Richardson, PT, DPT, a board-certified neurologic clinical specialist and clinical director at Re+active PT in Los Angeles. Support wedges, roller pillows, and foam leg supports can relieve the aches and pains. “I definitely recommend them for my patients with lower back pain.” (amazon.com, helixsleep.com)

Blue light glasses.
“Light sensitivity is common after a concussion or stroke,” says Richardson. This is true for many types of light and frequencies, including sunlight and computer screens. By blocking out blue light, the specialized glasses can alleviate sensitivity and headaches. (eyebuydirect.com, felixgray.com, warbyparker.com)

Rocking knives.
“Specialized equipment for the kitchen is always a welcome gift for people with neurologic conditions who love to cook and bake,” says Fox. The rocking knife is designed to cut food with a back-and-forth motion and is perfect for those who can’t use a knife and fork because of tremor or muscle fatigue. A pizza cutter is another option. (amazon.com)

Immersion blenders.
They’re lighter than traditional blenders and require only one hand to operate, so they’re good for those with impaired dexterity. (kohls.com, target.com, walmart.com)

Weighted utensils and adaptive gadgets.
Many kitchen utensils are available in heavier-than-normal models for people with dexterity problems. They can help offset tremors associated with Parkinson’s, Richardson says. Adaptive versions of gadgets like electric can openers, vegetable choppers, and apple slicers get the job done with just one hand, which could be useful for a person with a fine motor deficit. (amazon.com, rehabmart.com, rehab-store.com, specialsupplies.com, thewrightstuff.com)

Adaptive dishes.
Bowls and plates with feet that grip the surface and shapes that make it easier to scoop food are helpful for stroke survivors and others who may have weakness on one side. (amazon.com, ncmedical.com)

Silicone place mats and stabilized cutting boards.
Place mats prevent plates from slipping, and stable cutting boards make chopping vegetables safer and easier. (amazon.com)

The Staybowlizer.
A brightly colored ring-shaped accessory made of silicone, the Staybowlizer holds bowls firmly in place so there’s less tipping or spillage while preparing meals. “From an occupational therapy standpoint, these compensate for extra movement like tremor,” Fox says. (amazon.com, staybowlizer.com)

Calendar Icon 300x290 - Holiday Gift Guide for Those with Neurological Issues

Gifts For Daily Living


Electric Toothbrushes Or Shavers.

Since these devices do most of the work, they can be helpful for people with tremor or impaired dexterity. An electric shaver can prevent cuts. (amazon.com)

Squatty Potty.
Constipation is often one of the earliest nonmotor symptoms for people with Parkinson’s disease, says Richardson. The Squatty Potty footstool positions the body optimally, and it comes in newer styles made of Lucite or bamboo. (squattypotty.com)

Raised toilet seats.
“If you have muscle weakness, it may be difficult to stand up from lower surfaces, such as toilets,” Richardson says. “A raised toilet seat promotes independence by allowing people to get on and off the toilet more easily.” (walgreens.com)

Slip-on shoes and accessories.
Brands like Kizik, Zeba, and Billy Footwear offer shoes that are easy to put on—and stylish. A long shoehorn can help with lace-up shoes, and a sock assist makes putting on socks a lot easier. (billyfootwear.com, kizik.com, zebashoes.com)

Compression socks.
These snug yet stretchy items can ease neuropathy, reduce temperature sensitivity, and prevent muscle cramping, says Cecchi. (affordablecompressionsocks.com, bombas.com)

Adaptive clothing.
Tommy Hilfiger, MagnaReady, and Silverts are some brands that make clothing with Velcro closures instead of buttons. “And it really looks good now,” Fox says. (magnaready.com, silverts.com, usa.tommy.com)

Signature stamps.
Signing important documents can be time-consuming and frustrating for people with impaired fine motor skills. Signature stamps can solve the problem. (simplystamps.com, vistaprint.com)

Writing tablets.
Digital notepads are made just for writing (or drawing), not internet and app use, and they easily erase messages. That makes them ideal for people who have trouble speaking but can still write, says Cecchi, who uses one in her clinic. (mobiscribe.com, myboogieboard.com, target.com, walmart.com)

Picture dictionaries.
Many stroke survivors experience aphasia, which impairs all aspects of language—speaking, listening, reading, and writing—and renders communication almost impossible. Picture dictionaries such as This, Please!: The Tourist Picture Dictionary and Point It: Traveller’s Language Kit are invaluable resources, allowing people to point to what they’re trying to say rather than verbalize it. (amazon.com)

Dictation software.
For those who can speak but have difficulty writing, consider this electronic solution. (livevox.com, dolbeyspeech.com, talkatoo.com)

Writing implements.
Weighted pens make writing easier for those with tremors. Writing grips, lined sticky notes, and wrist braces also improve the ability to write. (rehab-store.com, walmart.com)

Voice-controlled devices.
An electronic “virtual assistant” that responds to spoken instructions to play music or turn on and off lights may help with communication and voice modulation, Fox says. (amazon.com)

Mobility Iconpng 278x300 - Holiday Gift Guide for Those with Neurological Issues

Gifts for Getting Around

Canes.
For people with mild walking impairments, a personalized or attention-grabbing cane might be a fun gift, especially if the recipient associates it with more independence or a higher quality of life, says Fox. “It’s important to connect the cane with an added benefit such as getting out to visit a friend.” Some canes even have a built-in GPS navigation system, which can be very handy, says Andrejack. (walmart.com, amazon.com, myrmsstore.com)

Lift chairs and transport chairs and boards.
These are vital but expensive, so consider offering to share some of the cost. But first check with the recipient to see if these items are covered by insurance through durable medical equipment benefits. If recipients already have these devices, make them more personal and fun with light-up wheels, stickers, or monograms for chairs. (amazon.com, sitnstand.com, walmart.com)

Reachers and grabbers.
These devices help access items in hard-to-reach areas, especially for people in wheelchairs or at risk for falling. (amazon.com, carewell.com, myrmsstore.com, walmart.com)

Car-assist handles.
These small, portable levers wedge into the latches of car door frames, making it easier to get in and out of vehicles. (amazon.com, mdmaxx.com, medicalsupplydepot.com)

Car handlebars and car caddies.
These are additional devices that help people get into and out of cars with less effort. (amazon.com, braunability.com, homedepot.com, mdmaxx.com, medmart.com, mobilityworks.com)

Seat lifts.
Combine the gift of a meal at the recipient’s favorite restaurant with a seat lift for the person’s car, says Fox. “Recipients may enjoy the prospect of a dinner more, knowing they can transfer from car to restaurant easily,” she says. (braunability.com, lifewaymobility.com, sitnstand.com)

Exercise Icon 300x290 - Holiday Gift Guide for Those with Neurological Issues

Gifts for Fitness

Personal trainers.
If going to the gym is not feasible, book a session with a personal trainer who has experience working with clients who have the same condition as the person to whom you’re giving this gift. Reach out to the recipient’s doctor or physical therapist, if possible, for trainer recommendations.

Gym memberships.
Exercise is crucial for people with neurologic disorders, says Richardson, since it increases dopamine, a neurochemical that affects movement, mood, and coordination. (A loss of dopamine can make exercise difficult due to apathy, muscle weakness, fatigue, or poor coordination.) A gym membership can be motivating, especially when the gift giver commits to going too!

Trekking poles.
“Walking sticks improve stability and posture,” says Richardson. They also can increase arm swing and stride length in people with Parkinson’s disease. (kuiu.com, llbean.com, rei.com)

Fitness trackers.
Being stuck at home during the pandemic worsened symptoms for many of Fox’s patients. A fitness tracker can motivate people to move, indoors and out. Fox suggests including a homemade coupon with the tracker that can be redeemed for setting up the tracker. (apple.com, bestbuy.com, koretrakpro.io, target.com, walmart.com)

Weights.
A set of dumbbells or a floor or hand cycle allows people to exercise at home, which is important for immunocompromised and other vulnerable patients who still may be avoiding the gym, says Fox. Just be sure the recipient doesn’t have a condition that precludes using the equipment, she says. (amazon.com, dickssportinggoods.com, walmart.com)

Gift Card Icon 297x300 - Holiday Gift Guide for Those with Neurological Issues

Gifts Outside the Box

Electronic or audiobooks.
E-books are lighter and more portable than traditional books, and audiobooks are ideal for people with vision problems. (audible.com, ebooks.com)

Digital music services.
“Music is so important, for everything from movement to mood,” says Fox. Creating personalized playlists or giving a gift subscription to a monthly music streaming service like Spotify encourages exercise, boosts mood, and triggers memories. (amazon.com, apple.com, idagio.com, pandora.com, spotify.com)

Photographs.
“Framed pictures are thoughtful, but for people whose fine motor skills have declined, they can be breaking hazards,” says Cecchi. “Photo albums work much better, or even individual prints of special photos that evoke fond memories.” Creative gift givers could design a digital or printed scrapbook. (mixbook.com, shutterfly.com, snapfish.com)

Homemade coupons.
Create fun coupons with promises to clean out closets, take out the trash, mow the lawn, or cook a meal.

Days of beauty.
A certificate for a haircut and style may be a welcome gift, especially if you help make the appointment and drive the person to the salon.

Meals.
Bring over takeout or homemade food for two to save your gift recipient the stress of cooking, and to provide company. Cecchi says, “This can be as simple as just bringing someone a milkshake,” which is both delicious and easy to swallow.

Mindfulness aids.
Meditation and mindfulness can ease anxiety and depression, says Fox. To get friends and loved ones started, consider app subscriptions, adult coloring books, or mindfulness workbooks.

Biofeedback tools.
For Richardson’s patients who have autonomic dysfunction—the body can’t regulate body functions like blood pressure, heart rate, and digestion—she uses a wearable biofeedback device called Lief that makes patients aware of erratic nervous system responses and teaches them corrective breathing exercises. It requires a monthly subscription, and users can return it when they’re done. (getlief.com)

Think Twice

You don’t want to give a gift that’s impractical or inappropriate, no matter who the recipient is. If it’s a person with a neurologic condition, certain gifts may be awkward, best shared privately, or better to be coordinated with the recipient’s physician.

Food treats.
A fruit basket or a box of candy is lovely—unless the recipient has problems with swallowing, as can happen with Parkinson’s disease and amyotrophic lateral sclerosis.

Medication organizers.
Items like dispensers, organizers, or pill caddies might feel impersonal or too condition-focused, says John Andrejack, a professor in New York City who has Parkinson’s disease.

Outings.
Without fully understanding the recipient’s abilities and limitations, you might choose an event or excursion that could be stressful. Talk with the person and make plans together if a trip or a concert seems like a good gift idea, says JoEllyn Fox, DPT, lead therapist at the Dan Aaron Parkinson’s Rehabilitation Center in Philadelphia.

Portable urinals.
“These can be so useful for people with Parkinson’s, but I wouldn’t want to get one for Christmas,” says Andrejack. That would make me extremely uncomfortable.”

Walkers or rollators.
“These gifts can be a bit like giving your mom a vacuum for Christmas,” says Fox. They can be practical, but not personal or exciting. And even though retailers like Amazon and Walmart stock them, many of these devices are better purchased through a doctor’s or physical therapist’s office, where they can be fitted properly.

Click here or the image below to subscribe to our mailing list:

subscribe - Holiday Gift Guide for Those with Neurological Issues

Your generous Donations allow IAES to continue our important work and save lives! 

seal - Holiday Gift Guide for Those with Neurological Issues

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Holiday Gift Guide for Those with Neurological Issues

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Holiday Gift Guide for Those with Neurological Issues 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

5 Ways to Answer “How Can I Help”

5 Ways to Answer “How Can I Help”


November 23, 2022 |  By Michelle Seitzer of Caregiving Advice

A message from IAES Blog staff:

In the US, Thanksgiving Day and week are upon us. And we have much to be thankful for. For those within the AE community, we cannot thank all those that care for us, in any capacity, enough! As we round out Caregiver Awareness month and head into a holiday season of joy, peace, and grace, may we all continue to be aware and be thankful for all we have been given. 

Michelle Seitzer founder of Caregiving Advice has graciously offered to let us share her article regarding ways to help those that care for us the most. We hope you find this as informative as we have!

She offers wonderful tips, and many ways caregivers can be cared for!!!

——-

Want to help a caregiver whose life is busy, busy, busy? Here’s how!

During this week’s Coffee Chat—our brand new virtual support group that takes place Mondays at 11ET on Instagram Live—we talked about what kind of help is actually helpful for caregivers, and why it’s so hard to get it.

We first posted this article in February 2020, right before the world shut down. How times have changed since then! But the advice we shared here? It hasn’t changed at all. Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.

Because it feels like more work.

When caregivers hear these age-old phrases—“How can I help?” or “Let me know if I can do anything!”—our initial internal reaction is STRESS. Because the thought of coming up with helpful tasks feels like extra work, and extra work is something no caregiver wants. We want someone to lighten our load, not add to it!

Now don’t misunderstand: We are generally thankful for the offers. We appreciate that you see our need for help and want to provide it. But we need you to make it a little easier for us. And sometimes, we just need a little more time to think about it! As caregivers, we need to say that. “Thanks for your offer, can I get back to you with some ideas? And can you check in with me in a week if I forget?”

So caregivers, next time someone asks you *THE QUESTION,* refer to these 5 simple suggestions. And if you’re reading this as a person who wants to help a caregiver, thank you for your willingness; we hope you find these ideas helpful!

#1: Bring us a meal.

An oldie but a goodie: make us a meal! Or make a couple of meals for me to stack in my freezer, or send gift cards for GrubHub, UberEATS, or our favorite local pizzeria. Planning meals is often the last thing we want to squeeze into our busy day, which leads to lots of unhealthy dinners like frozen pizzas—or even worse, skipping meals altogether.

#2: Come visit us.

Screen Shot 2021 07 14 at 9.37.57 AM - 5 Ways to Answer "How Can I Help"

Offer to sit with our caree for a few hours while I run errands. Don’t feel comfortable with that? Just stop by for a visit when I’m there (if we’re all up for visitors that day)! Caregiving can be extremely lonely, so it’s a huge help to see friendly faces and welcome visitors! It’s equally as refreshing to have someone take over so I can get a few items checked off my to-do list.

#3: Fill our (gas) tanks.

If you really want to do something of monetary value for us, a gas gift card is always appreciated! There’s a lot of driving involved in caregiving, and it adds up. And financial pressures add to our already heavy caregiving load.

#4: Bring us groceries (treats included).

Screen Shot 2021 07 14 at 9.35.30 AM - 5 Ways to Answer "How Can I Help"

With online shopping now available in almost all areas—and with a variety of pick-up, drive-up or delivery options—this is an easy way to help that makes a HUGE difference!

Think of how much work it is to grocery shop…

It starts with planning: thinking about meals and snacks, then assessing what you need, taking note of what you’ve run out of, and jotting it down.

Then you have to figure out when to go, and depending on your caregiving situation, this can be a logistical challenge. Who can stay with your caree, if they need supervision? Or do you bring the person along, which comes with its own challenges? Some caregivers opt to shop at night when a spouse, partner, or child can stay home with the person you care for—but that often means shopping on tired legs and with a weary mind.

Now that you’ve figured out when to go, you have to drive there, go inside, fill your cart, empty your cart on the belt, load the bags in your cart, bring them out to your car, load them in your car, drive home, bring the bags into the house, then put the groceries away.

And then, of course, make a list of the things you forgot, because that inevitably happens, right?!

When you break down all the steps, you realize how much work is involved—and why it would be SUCH a help for someone to step in on this necessary life activity. (It also makes the case for paying the nominal delivery fee for those services, if you ask me!)

#5: Update others for us.

Offer to update others when something big happens. This one is a little tricky in terms of privacy, but it can still be super helpful.

The key word here is “offer.” Never give updates on my caregiving life without checking with me first. But if you know something big just happened (new diagnosis, a fall, change of living situation or school depending on age, a death or similar big loss/change in the family, etc.), ask me if I could help with letting others know.

Who are those “others?” Those are the people who would love to hear the latest on my caree but don’t necessarily need to hear it from me directly—i.e. my pastor, neighbors, boss/coworkers, friends I haven’t talked to in a while, to name a few.

It’s emotionally exhausting to repeat the same information — especially bad news — over and over again, so having someone offer to take on that task provides a huge sense of relief.

 

And there you have it! Five simple ways to help a caregiver whose life is busy, busy, busy. Pass this on to others who are looking for ways they can help, and let us know if you’d add anything to this list by commenting below. 

 

Click here or the image below to subscribe to our mailing list:

subscribe - 5 Ways to Answer "How Can I Help"

Your generous Donations allow IAES to continue our important work and save lives! 

seal - 5 Ways to Answer "How Can I Help"

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - 5 Ways to Answer "How Can I Help"

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - 5 Ways to Answer "How Can I Help" 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Rehabilitation Strategies

Rehabilitation Strategies

December 8, 2021 | By Mari Wagner Davis, RN ACM

The staff at IAES is proud to present an informational blog written by our wonderful Support Services Coordinator, Mari Wagner Davis. Mari is instrumental in helping AE Warriors, their families and caregivers receive the information and services necessary to optimize their diagnosis, care, and recovery. She is a mighty warrior herself and developed strategies that have not only greatly helped her but have also aided hundreds of others on their AE path forward. We hope you find the information and story to follow, helpful!

—————–

My name is Mari Davis, and I am the Support Services Coordinator with the International Autoimmune Encephalitis Society. I was diagnosed with limbic encephalitis almost 5 years ago after having seizures at work. After being diagnosed with AE, I received plasmapheresis, IVIG and steroids. Due to ongoing seizure issues, I remain on seizure medications, and I continue to have memory issues.

After my initial diagnosis and treatment, I had a brief inpatient rehabilitation stay and then was able to move back to our home and transition to a day rehabilitation program. I was, also, able to complete a cognitive rehabilitation computer program. As time went on, it became apparent to me that there was little known about what rehabilitation services may be best for AE patients like me and those with other forms of AE. We all differ greatly in our AE recovery and rehabilitation but many of us have similar issues. I began to question and investigate what services could help to provide the best possible outcomes and help those with AE reach their maximum potential over time.  For example, I have noticed that I have improved greatly in some areas and not so much in other areas.   I have memory issues and have issues with divided attention. I find it difficult to multi-task. Although inpatient and outpatient rehabilitation services ended, I have continued to work on making progress in the areas that I struggle with. With my background and work as a nurse case manager coupled with my own diagnosis of AE, I have been on a quest to find ways to better outcomes not only for myself but all those with AE. Although inpatient and outpatient rehab is wonderful, for me, it has not been AE specific enough.

Many of the areas that I have made the greatest amount of progress on are by developing methods and strategies that I have come up with myself and with the help of others and may be beneficial for those with AE. Realizing and accepting that I have a memory issue has made me become more organized. I have had to develop adaptive strategies for myself. Many of these ideas were not taught during rehab. In the following paragraphs, I will outline strategies that have greatly helped me.

When I plan meals and go food shopping, I save and write my grocery list and organize it by meal versus simply making a list of random items needed at home.  Before I started doing this, I would forget what I had planned on making and because of this I became confused and frustrated.  When I plan to make a meal, I will leave something out on the counter to remind myself of what I planned to make. It is a visual reminder of the meal I plan for that day. Another visual reminder strategy I use is to leave the light on that goes to the laundry area in our home. This visual cue helps me to remember that ‘light on’ means laundry being done. I then remember to go and check on the laundry’s progress. Another visual reminder cue I find useful is to leave my medication bottles on the counter and use a pill organizer. This makes it easier and ensures that I take my medications and keep track of when a med refill is needed. I feel what is out of sight is out of mind. Visual cues have been a very big help for me in overcoming memory issues.

Another way this strategy has been useful is to keep a calendar on my refrigerator. I note events on the calendar and keep this same event calendar on my cell phone. I then utilize the various alarm features and different sounds on my phone for specific events. Having the calendar on the fridge is a visual reminder for me but also lets my husband know what I have planned for certain days. One small thing I do is to call him when I leave the house and call him when I arrive where I am going. This gives him a sense of comfort knowing that I remembered the planned event, have arrived on time, and once home, have gotten there safely. I, also, use phone alarms for my medications. I find this especially useful in the evenings when I may have other activities going on or am tired.  My phone can be useful for directions, typing notes regarding things that I want to accomplish both routine and nonroutine. List making has become paramount for me. For many without AE remembering what needs to be done daily, weekly, and monthly may be easy. For me making a list either on paper or on my phone and then checking off the items once they are done has been a great strategy.  For many of us it can be easy to become frustrated or depressed when we acknowledge or need to deal with memory issues. It can be exhausting. Making lists and checking items off not only assures that things get done but it also gives us a sense of accomplishment and we can then see progress being made. For me, I feel more positive and successful in my rehabilitation.  

When I was discharged from rehab to home, I had no schedule. I slept quite a bit, which is necessary for our recuperation and recovery. And many of us still need to sleep, nap and rest more than we previously did. But I was left with no structure or schedule. I had previously been very busy with work, family, and friends. I felt at a loss.  I no longer had the daily structure I had loved and thrived on before. Trying to develop a new routine can be helpful. It provides structure and can help an individual by giving purpose. For those wanting to and able to return to work this provides a good transition strategy between recovery and returning to work. Simply giving yourself a daily timetable of things to get accomplished can be a mental boost. Of course, at times we need to recognize and pay attention to our brains and bodies and know the daily routines may need to change due to treatments, etc.

Another issue I have realized is that after acquired brain injury, rest is important. It is as important as working on the issues or deficits that remain difficult for us. Most of us need additional rest. At the end of a day, I will find that if I lay down on the couch watching TV, I will fall asleep. If I get up early, I may need a nap during the day. I may need breaks if I am working on something that is cognitively challenging. Giving myself the time to rest, will allow me to be more successful in the things that I am working on.

Exercise can also help in recovery. But it needs to be added to one’s schedule carefully and as tolerated. Exercise can be scheduled into the day at a time that will work with other planned activities. It may take time to come up with a daily routine and individuals with acquired brain injury may need help in initially making a schedule. But developing daily routines for those of us with AE can help our recovery both mentally and physically.

Many of us diagnosed with AE are not able to drive a car or any vehicle for many reasons but the main one being we have had seizures. In many countries we must prove we are seizure free for a certain period of time before our driver’s license can be reinstated or we may need to take a special type of drivers test or class to be able to drive. In my case, I took a special driver’s test with the DMV (Department of Motor Vehicles). The instructor was trained to work with individuals with disabilities and taught me a lot about safe driving. Although I did not pass the driving test the first time, I did the second time, by utilizing what he taught me. I am probably a safer driver now than I was before AE. One of the things the instructor taught me included waiting a bit once the light turns green in case someone is running the red light. This simple act would allow me to avoid getting hit by a car going through the light. I now leave more space between my car and the car in front of me. If there is a reason the car in front of me stops or is stuck in traffic, leaving additional space allows me a way to move into the next lane. I am cautious about my speed and leave additional time to get to where I am going. Prior to AE I used landmarks such as buildings to help when going someplace. Due to my memory issues and the fact that places change, landmarks are moved, etc., I now utilize my phone’s navigation apps versus trying to remember directions. And I check directions prior to leaving home so I am more confident in how to get to a location. Being able to drive once again and utilizing different direction strategies has allowed me some independence and given me confidence in what I can accomplish.

Having a new disability can be difficult to accept. I am not the same person I was before AE. I have seen a psychologist since I was discharged home. I have struggled with grieving the loss of the old me and accepting who I am today. With time and work I can say I have made progress; I now have much more appreciation for other people, I am not in such a hurry that I do not see what may be going on with others around me. I realize that some of my relationships where those of convenience, and I know how much it can mean to people to take a small amount of time to acknowledge them and spend some time with them. I can say that working with a professional around the issues of grief and adaptation can be helpful. I will say recovery after autoimmune encephalitis is a marathon not a sprint. Additional research about the stages of recovery after a diagnosis of autoimmune encephalitis is needed to help provide the services that can help both the individual and the family.

Utilizing some of the strategies I came up with has helped ensure progress in my recovery. It has helped boost my moral. Developing visual cues, trying to schedule my day, exercising when I can, getting adequate rest, learning new driving strategies, and seeing a psychologist have been extremely useful in allowing me to become the new me! 

rehab strat - Rehabilitation Strategies

Click here or the image below to subscribe to our mailing list :

subscribe - Rehabilitation Strategies

Your generous Donations allow IAES to continue our important work and save lives! 

guidestar platinum logo 300x300 1 e1605914935941 - Rehabilitation Strategies

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Rehabilitation Strategies

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Rehabilitation Strategies 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

5 Ways to Answer “How Can I Help”

5 Ways to Answer “How Can I Help”


November 10, 2021 |  By Michelle Seitzer of Caregiving Advice

A message from IAES Blog staff:

In the US, Thanksgiving Day and week are upon us. And we have much to be thankful for. For those within the AE community, we cannot thank all those that care for us, in any capacity, enough! As we round out Caregiver Awareness month and head into a holiday season of joy, peace, and grace, may we all continue to be aware and be thankful for all we have been given. 

Michelle Seitzer founder of Caregiving Advice has graciously offered to let us share her article regarding ways to help those that care for us the most. We hope you find this as informative as we have!

She offers wonderful tips, and many ways caregivers can be cared for!!!

——-

Want to help a caregiver whose life is busy, busy, busy? Here’s how!

During this week’s Coffee Chat—our brand new virtual support group that takes place Mondays at 11ET on Instagram Live—we talked about what kind of help is actually helpful for caregivers, and why it’s so hard to get it.

We first posted this article in February 2020, right before the world shut down. How times have changed since then! But the advice we shared here? It hasn’t changed at all. Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.

Because it feels like more work.

When caregivers hear these age-old phrases—“How can I help?” or “Let me know if I can do anything!”—our initial internal reaction is STRESS. Because the thought of coming up with helpful tasks feels like extra work, and extra work is something no caregiver wants. We want someone to lighten our load, not add to it!

Now don’t misunderstand: We are generally thankful for the offers. We appreciate that you see our need for help and want to provide it. But we need you to make it a little easier for us. And sometimes, we just need a little more time to think about it! As caregivers, we need to say that. “Thanks for your offer, can I get back to you with some ideas? And can you check in with me in a week if I forget?”

So caregivers, next time someone asks you *THE QUESTION,* refer to these 5 simple suggestions. And if you’re reading this as a person who wants to help a caregiver, thank you for your willingness; we hope you find these ideas helpful!

#1: Bring us a meal.

An oldie but a goodie: make us a meal! Or make a couple of meals for me to stack in my freezer, or send gift cards for GrubHub, UberEATS, or our favorite local pizzeria. Planning meals is often the last thing we want to squeeze into our busy day, which leads to lots of unhealthy dinners like frozen pizzas—or even worse, skipping meals altogether.

#2: Come visit us.

Screen Shot 2021 07 14 at 9.37.57 AM - 5 Ways to Answer "How Can I Help"

Offer to sit with our caree for a few hours while I run errands. Don’t feel comfortable with that? Just stop by for a visit when I’m there (if we’re all up for visitors that day)! Caregiving can be extremely lonely, so it’s a huge help to see friendly faces and welcome visitors! It’s equally as refreshing to have someone take over so I can get a few items checked off my to-do list.

#3: Fill our (gas) tanks.

If you really want to do something of monetary value for us, a gas gift card is always appreciated! There’s a lot of driving involved in caregiving, and it adds up. And financial pressures add to our already heavy caregiving load.

#4: Bring us groceries (treats included).

Screen Shot 2021 07 14 at 9.35.30 AM - 5 Ways to Answer "How Can I Help"

With online shopping now available in almost all areas—and with a variety of pick-up, drive-up or delivery options—this is an easy way to help that makes a HUGE difference!

Think of how much work it is to grocery shop…

It starts with planning: thinking about meals and snacks, then assessing what you need, taking note of what you’ve run out of, and jotting it down.

Then you have to figure out when to go, and depending on your caregiving situation, this can be a logistical challenge. Who can stay with your caree, if they need supervision? Or do you bring the person along, which comes with its own challenges? Some caregivers opt to shop at night when a spouse, partner, or child can stay home with the person you care for—but that often means shopping on tired legs and with a weary mind.

Now that you’ve figured out when to go, you have to drive there, go inside, fill your cart, empty your cart on the belt, load the bags in your cart, bring them out to your car, load them in your car, drive home, bring the bags into the house, then put the groceries away.

And then, of course, make a list of the things you forgot, because that inevitably happens, right?!

When you break down all the steps, you realize how much work is involved—and why it would be SUCH a help for someone to step in on this necessary life activity. (It also makes the case for paying the nominal delivery fee for those services, if you ask me!)

#5: Update others for us.

Offer to update others when something big happens. This one is a little tricky in terms of privacy, but it can still be super helpful.

The key word here is “offer.” Never give updates on my caregiving life without checking with me first. But if you know something big just happened (new diagnosis, a fall, change of living situation or school depending on age, a death or similar big loss/change in the family, etc.), ask me if I could help with letting others know.

Who are those “others?” Those are the people who would love to hear the latest on my caree but don’t necessarily need to hear it from me directly—i.e. my pastor, neighbors, boss/coworkers, friends I haven’t talked to in a while, to name a few.

It’s emotionally exhausting to repeat the same information — especially bad news — over and over again, so having someone offer to take on that task provides a huge sense of relief.

 

And there you have it! Five simple ways to help a caregiver whose life is busy, busy, busy. Pass this on to others who are looking for ways they can help, and let us know if you’d add anything to this list by commenting below. 

 

Click here or the image below to subscribe to our mailing list:

subscribe - 5 Ways to Answer "How Can I Help"

Your generous Donations allow IAES to continue our important work and save lives! 

seal - 5 Ways to Answer "How Can I Help"

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - 5 Ways to Answer "How Can I Help"

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - 5 Ways to Answer "How Can I Help" 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Caregiver’s guide to self care & avoiding caregiver burnout

Caregiver’s guide to self care & avoiding caregiver burnout


November 10, 2021 |  By the SingleCare Team; medically reviewed by Gerardo Sison, Pharm.D.

November is Caregiver Awareness month! The staff and members of IAES celebrate, love, depend on and, at times, could not get by without those that have cared for us! To say we appreciate you is an understatement. So, this month we celebrate ALL of you wholeheartedly!

Thank you all!

We are honored to share with you a wonderful article by The SingleCare Team and thank them for allowing us this opportunity!

——-

Learn risk factors, signs of burnout, and how to reduce the danger of caregiver burnout

A caregiver is anyone who assumes a significant level of responsibility for another person. This could be a family member, friend, or home healthcare worker. Caregivers demonstrate selflessness, commitment, and duty every day. But they also take on emotional and physical burdens that can become overwhelming.

What is caregiver burnout?

Caregiver burnout is a state of total exhaustion brought about by the emotional, physical, and mental toll of assuming responsibility for another person’s needs.

How does caregiver burnout start?

In most cases, caregiver burnout begins with emotional exhaustion. The stress and burden of providing for someone’s critical needs can exhaust a person’s ability to cope. Emotions like anger, sadness, and fear can be harder to control than usual.

caregiver burnout 440x500 - Caregiver’s guide to self care & avoiding caregiver burnout

Physical exhaustion often follows. Caregiving often requires new physical demands and usually leads to a reduction in other physical activities like exercise. One person may feel lethargic because they no longer go on their morning walk. Another person may have sore muscles because they have to bathe and clothe someone else, or sleep somewhere unfamiliar.

The combination of emotional and physical exhaustion can lead to mental exhaustion. A caregiver may begin making simple mistakes like forgetting appointments or leaving a key ingredient out of a favorite recipe. Restful sleep may be difficult, and a caregiver may lack motivation for social interaction. This is when exhaustion has reached the burnout stage.

If caregiver burnout is not addressed, it can lead to caregiver depression—a dangerous situation for the caregiver and the person to whom they are giving care. Depression is often characterized by feelings of worthlessness, sadness, or irritation, which can sometimes lead to chronic negative thoughts of hurting themselves or others.

If you or a loved one is experiencing severe depression or suicidal thoughts and behaviors, seek help from a healthcare provider or emergency room immediately. You can also call the National Suicide Prevention Lifeline at 800-273-TALK (8255).

Why is caregiving so exhausting?

Caregiving is exhausting because of the time and energy it requires. When someone you love can’t entirely fend for themselves, you want to help them. But when you are preparing meals, sorting out their financial situation, or helping them use the bathroom, you are using up energy and hours normally devoted to your own well-being.

In the end, the exhaustion often comes from losing the ability to do things that you enjoy and that make you, you.

What are the risk factors of caregiver burnout?

Not all caregivers get caregiver burnout. But among those that do, researchers have identified certain risk factors that seem to make caregivers more likely to suffer from burnout. Not everyone who has these risk factors will experience burnout, and people who don’t have any of these factors may experience burnout anyway.

Still, it is worth reviewing these risk factors and being aware of any that apply to you.

  • Physically demanding tasks (i.e., lifting someone out of a bathtub)
  • Taking care of someone that has severe behavior problems (i.e., dementia), not only physical ones
  • Financial difficulties
  • Living with the person you’re caring for
  • Lacking friends or a support network
  • A high percentage of time or long duration spent as a caretaker
  • History of substance abuse

What are the signs of caregiver burnout?

Certain signs may indicate total exhaustion or caregiver burnout. If you are a caregiver or know someone who is a caregiver, look for the following signs.

warning signs burnoiut 436x500 - Caregiver’s guide to self care & avoiding caregiver burnout

  • Feeling overwhelmed
  • Feeling constantly worried
  • Not getting enough sleep, or sleeping too much
  • Gaining or losing weight
  • Feeling angry at the person you’re caring for
  • Feeling easily irritated
  • Avoiding friends and family
  • Feeling sad or hopeless
  • Having frequent body pains, such as headaches
  • Increasing the use of alcohol, drugs, or prescription medications
  • Getting sick more often

Caregivers experiencing any of these symptoms should speak to their doctor.

Measuring caregiver stress and burnout

The Zarit Burden Interview is the most widely used diagnostic tool for identifying caregiver burden.

To determine whether you are experiencing excessive caregiver stress, consider taking this Caregiver Health Self Assessment Questionnaire that was developed by the American Medical Association.

How to avoid caregiver burnout

You now have an understanding of what caregiver burnout is, how to recognize it, and who is most likely to get it. Here are 12 proven methods of avoiding burnout.

1. Make sure you get breaks for yourself

There’s no “pause button” for caretaking. Every caregiver may have felt the urge to simply walk away, but they understand that doing so could be catastrophic for the person who is relying on them. You don’t want to let it get to that point.

That’s why implementing breaks into your daily routine is so important. Short breaks can have a hugely positive impact on your mental outlook.

In some cases, the person you are taking care of can manage on their own for a few hours, so you can get away. Others may at least be able to entertain themselves safely while you are in another room.

If you are helping someone who needs constant supervision, you’ll have to be proactive about scheduling breaks. This could mean drafting a neighbor, friend, or family member to help periodically. Or it could mean hiring a home healthcare worker to stop in a few days per week.

We’ve already learned that a high percentage of time spent as a caregiver is a risk factor for burnout. Do everything you can to ensure you have time to yourself to relax and recharge. It’s the best thing for you and for the person you’re caring for.

2. Use tools that make sharing updates simpler

A primary caregiver isn’t only a healthcare worker, they’re a reporter, too. Close family and friends will expect updates on topics like symptoms, prognosis, how their medication is working, what the person is eating, and more.

Individual calls or emails are nice, but time-consuming. When a caregiver isn’t able to provide updates as often as they’d like, they can feel guilty about it which adds to their burden.

Tools like CaringBridge, PostHope, or MyLifeLine make communication easier. These sites let you post updates simultaneously—with controls to protect your loved one’s privacy.

A single update shared with everyone also reduces the risk of miscommunication. Everyone will have the same information, so they don’t feel left out.

3. Use online resources

Every caregiver should have a device with internet access. Critical advice and important resources can often be just a few clicks away.

One of many examples is Eldercare Locator. This free resource site, produced by the U.S. Department of Health and Human Services, has a clean, readable design and trustworthy links. In just a few clicks, you can connect with insurance, transportation, and home care resources.

Many other online resources for caregivers are worth consulting, such as online support groups and local home health organizations.

4. Join a support group

Participating in a support group is one of the best ways that a caregiver can use their limited free time. Caregiving can be isolating and frustrating. On the most basic level, a support group reminds caregivers that there are others facing the same challenges.

But on a deeper level, a support group can help provide guidance that’s based on experience. And a caregiver can feel the satisfaction and catharsis of helping others by sharing their successes and failures with other like-minded individuals.

Bonding over these shared experiences often leads to friendship. As supportive as family and friends can be, they can only sympathize with what you’re going through. A fellow caregiver can share the burden and support you, like a coworker or teammate.

5. Take a self-assessment test regularly

Caregiver burnout doesn’t happen all at once. Emotional, physical, and mental exhaustion accumulates over time.

You stand a better chance of avoiding burnout if you track benchmarks in your mental health. Taking a self-assessment test regularly (say, once a month) will give you a clearer view of how well you are coping.

Self-assessments ask basic questions about your feelings and your physical health. They shouldn’t take more than 10 to 15 minutes. We recommend the Caregiver Health Self Assessment Questionnaire, which was developed by the American Medical Association.

This small-time investment could save you the consequences of burnout.

6. Maintain positive relationships with other friends and family

When a loved one is going through a health crisis, everyone wants to help. Sometimes the best help is the simplest: Reaching out to a friend or family member.

Caregivers need a sense of normalcy that can often be obtained by going on a walk with a former coworker, having brunch with old friends, or enjoying a night at the bowling alley.

Friends and family may feel that they have to do extra, or they may feel hesitant about trying to contact you. Try to maintain a schedule with friends and family members, either by having a phone call every few months or arranging lunch meetups once a week.

7. Set boundaries

One of the biggest changes when you become a caregiver is making decisions for someone else. And the people who also love that person may not always agree with the decisions you make.

You can’t make everyone happy, and being second guessed adds to your burden. Family and friends who want to provide help may do so in a way that interrupts your routine.

So set clear boundaries about things like who should attend doctor visits, when people should visit, and the types of assistance you actually need.

8. Set health goals for yourself, including mental health

The emotional burden of caregiving can cause you to neglect your physical and mental health.

Positive behaviors like exercise and meditation become important when you are under emotional strain. They are an effective way to calm your racing thoughts.

Give yourself achievable goals for activities like these. Phone apps can help by providing daily reminders and preset programs that last 10 to 30 minutes.

9. Set realistic goals for your caregiving and ask for help when you need it

Too many caregiving situations start in crisis mode and stay there. That’s a sure path to caregiver burnout.

Early on, work with your doctor to identify a realistic level of caretaking. Think about your loved one’s current and future needs and whether you will be able to provide them.

For example, someone with a progressive, debilitating disease may be able to function normally now, but what happens when they need help getting in and out of the bathtub?

What types of care are you comfortable giving? Could you give shots, or monitor IV drips? What about driving to pick up medications or necessities like groceries with them in the car?

Think about what will go into caretaking in your unique situation, and set realistic goals for what you can do.

Overextending yourself can lead to burnout (or a dangerous situation) for the person you’re caring for.

10. Talk to a professional, including a therapist or social worker

Becoming a caregiver is a time of stress and even shock. These are times when talk therapy can be extremely comforting and critical to our ability to cope.

Family and friends can be a sounding board, but they also have a close relationship with the person you’re caring for. That makes it hard to honestly discuss feelings of shame, guilt, or anger—feelings that are common and valid.

Speaking to a third party gives you the freedom to express yourself, put certain feelings out into the open, and work on strategies for coping with them.

11. Be realistic about your loved one’s disease

Another reason to seek advice from a third party is to be able to honestly discuss your loved one’s path to recovery—or their lack of one.

For dementia patients, sadly, there is no cure. And doctors can’t say for sure how fast the disease will take hold.

Acceptance can be the hardest part of dealing with certain diseases. We want to believe our loved ones will beat the odds. Thinking realistically about what the future holds can help us balance our hopes with the practical requirements of home care.

12. Develop coping strategies that work for you

Every caregiving situation is different and so is every caregiver.

Some people may decide to take time for solitary walks before deciding that what they really want is to join a support group.

Coping on a daily basis can be a real challenge. Try to identify the stressful parts of your day and how you could alleviate that stress. Maybe you’d benefit from getting housekeeping help or a meal delivery service. It doesn’t have to be forever, but keeping your head above water for the health of you and the person you’re caring for has to be the top priority.

Self-care is part of caregiving

Caregiving can be a shock to the system. Our instinct is to help our loved one, no matter the cost to ourselves. But as the days, weeks, and months go by, we run out of energy.

The most important thing for caregivers to remember is this: Successful caregiving includes caring for yourself.

 

Click here or the image below to subscribe to our mailing list:

subscribe - Caregiver’s guide to self care & avoiding caregiver burnout

Your generous Donations allow IAES to continue our important work and save lives! 

seal - Caregiver’s guide to self care & avoiding caregiver burnout

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Caregiver’s guide to self care & avoiding caregiver burnout

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Caregiver’s guide to self care & avoiding caregiver burnout 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Memory Strategies: Helping You Remember

Memory Strategies: Helping You Remember

August 25, 2021 | From the Speech Pathology Services at the University of Washington Medical Center

We are grateful for the permission to re-publish this article from the University of Washington Medical Center.

uw med - Memory Strategies: Helping You Remember

———-

This article explains the 4 types of memory. It also gives strategies to help you remember things if your memory is impaired.

What is memory?

memory - Memory Strategies: Helping You Remember

Injury or illness can affect your memory.

Memory is the ability to learn, store, and retrieveinformation. New or increasing problems withany or all of these 3 stages of memory oftenoccur after a traumatic brain injury, stroke, braintumor, multiple sclerosis, or other kind of injury or illness that affects your nervous system.

Some memory problems may also occur as part of normal aging, when manypeople have more trouble retrieving new information.

 

Types of Memory

  • Long-term (remote): memory for old, well-learned information that has been rehearsed (used) over time, such as the name of a childhood pet,memories of vacations, or where you went to high Long-termmemory tends to remain after injury or illness.
  • Short-term (recent): memory for new things that took place a fewminutes, hours, or days ago, such as what you had for breakfast or what you did yesterday. Short-term memory tends to be the most affected after People who have had brain injuries may have problems withattention span, storing memories, thinking quickly, and learning easily. These memory problems make it hard to understand and save short-term memories so that they can be rehearsed and stored in long-term memory.
  • Immediate (working): memory for information that is current, that youusually keep track of mentally, such as a phone number you look up, directions someone just gave you, or keeping track of numbers in your head when you add or subtract.
  • Prospective: the ability to remember to do something in the future, such as taking a medicine, going to an appointment, or following through on an assignment or project.

Strategies to Help Improve Your Memory

medicine - Memory Strategies: Helping You Remember

A medicine organizing tool can help you remember when yo take your medicines.

Your speech therapist can help you with strategies to help you remember new information. There are 2 maintypes of strategies to help your memory: internal reminders and external reminders.

Internal Reminders

  • Rehearsal: retelling yourself information you just learned, or restating it out loud in your own words.
  • Repetition: saying the same information over and over, either silently or out loud.
  • Clarification: asking others to repeat or rephrase information.
  • Chunking: grouping items to reduce the number of items to remember, such as grouping 7-digit phonenumbers into 2 chunks, one with 3 numbers and the other with 4 numbers.
  • Rhyming: making a rhyme out of important information.
  • Acronyms or alphabet cueing: creating a letter for each word you want to remember, or vice versa. One example is using the sentence “Every Good Boy Does Fine” to remember that the notes E, G, B, D, and Fare on the lines of a treble staff in music.
  • Imagery (also called visualization): creating pictures of the information in your mind.
  • Association: linking old information or habits with the new, such as taking your medicine at the same time that you brush your teeth.
  • Personal meaning: making the new information meaningful or emotionally important to you in some way.

External Reminders

  • Using a paper or electronic calendar or day planner.
  • Setting timers or alarms to remind you to do something.
  • Using written reminders such as to-do lists, shopping lists, and project outlines.
  • Recording new information with a voice recorder.
  • Using a medicine organizing tool, such as a MediSet.
  • Creating specific, permanent places for important One example is putting your keys, wallet, and cellphone in the same place every time you get home.
Your questions are important. Call your doctor or healthcare provider if you have questions or concerns.

Your generous Donations allow IAES to continue our important work and save lives! 

guidestar platinum logo 300x300 1 e1605914935941 - Memory Strategies: Helping You Remember         Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org     International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.  Trivia Playing cards 3 FB 500x419 - Memory Strategies: Helping You Remember For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.   AE Warrior Store 300x200 - Memory Strategies: Helping You Remember 

Be a part of the solution by supporting IAES with a donation today.

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

Employee Awards and Recognition
Translate »