Christmas Conversations

The holidays give us plenty of family time. Sometimes the results are cherished.  Sometimes they are frustrating and sometimes they are just hilarious. Sharing a few of the Christmas-centered conversations we’ve had this month:

Choices, choices!

Me: We should get a smaller tree this year. It’ll be easier to put up since the kids are out of the house.

Richard: What?! Get a smaller tree?! We’ve never had a smaller tree!

Me: Okay. That’s fine – I was just thinking it would be better for you and not cause you more back pain.

(After a five minute drive to Lowe’s):

Richard: Maybe we should get a table top tree. Taz won’t bother it then.

Me: What?! Are you crazy!? Why would we do that? We can’t have a table top tree!

Result: We bought a 10 foot tree for the front room and a 5 foot tree for the family room where Robert spends most of his time. So much for our big ideas for smaller trees!

Getting those cards done!

As I am putting lights on the smaller tree and Robert is working on his Christmas cards:

Me: Robert, what do you think of the tree?

Robert: I can’t see it with you standing in front of it.

Um . . . the tree is not that tiny and I am certainly not that big!

Stockings for everyone!

Me: Robert, remember my friend, Pegi, whose husband is sick? Well, he’s back in the hospital and his wife is very worried about him. Can you pray for him again?

Robert: I will. What are their names again?

Me: Pegi and Jimmy. Pegi says she believes you have a direct line to God and that when you pray, he listens and it helps her husband.

Robert: Tell her thank you. I will pray for both of them.

Trish and Rachel in the Christmas Spirit

Richard: Robert, it looks like Santa left some presents under the tree for you.  Have you been good this year?

Robert: Yes. I’ve been good.

Richard: I don’t know if I’ll get any presents.  I might have been naughty.

Robert: No, you were excellent.

Richard: What about Trish?

Robert:  She was very excellent.

Our yard in 2012 - looks very similar in 2013 . . . 

Driving Robert around looking at Christmas lights, Robert gave a running commentary on all lights. His opinion ranged from nice to very nice to beautiful. What? No excellent?

When we arrived home, Richard asked Robert how the lights were. Robert’s response: Excellent!

That's what I was looking for!

Wishing everyone a very happy Christmas!  If you don’t celebrate Christmas, I wish you a wonderful season, a belated happy Hanukah and the most excellent New Year! 

Robert’s Christmas Tour

I am exhausted!  I wrote a to-do list at the beginning of the weekend and knew it was a long shot to be able to get half of it done.

My to-do list included “to-dos” for Robert and my husband, too! Boy, are they happy with me!

I am happy to say we all got so much accomplished but are definitely tired today.  (Hate to admit this, but I’m a little sore too.)

Robert even completed 20 Christmas cards!!  Wow!  He had his feet propped up, was watching a few episodes of Wheel of Fortune and started writing out the cards. I kept asking if he needed a break or if he was tired of doing them and he said he wasn’t. He even said he was having fun! (See, I’m not so bad!).

Richard and I, with Robert’s help, got our Christmas trees (okay, yes, I said “trees”) – but we have so many ornaments I have to get an extra tree just to hold them all!  Plus, the smaller tree is in Robert’s room so it’s like he’s sleeping surrounded by Christmas. (I’m not looking so crazy now, am I? Wait, don’t answer that.)

Indoor decorations are done!  Outdoor decorations are thiiiis close to being done (it got too cold and dark to get on a ladder so I will work on this last little bit later this week).

It looks like I will actually have all the decorations up and cards out well before Valentine’s Day! J

Since the decorations are mostly all done, I want to share them with you.  This week I am also participating in the Caregiving.com Progressive Holiday Blog Party so what better way to celebrate than to share Christmas with everyone? Robert took us on a tour of the indoor decorations and he tells us all about them. Enjoy the video tour!

Hope your holidays are everything you hope them to be! 

10 Tips for the Working Caregiver

During November, for National Caregivers Month, Caregiving.com shared 10 Tips for Family Caregivers – every day. These tips came from other caregivers or Denise Brown and I have been grateful for these as there was always something someone came up with that was new and helpful.

My contributions were about caring for someone with epilepsy and, along with G-J Heins, tips for caregivers while traveling while traveling.  The tips today are about the working caregiver (and, yes, I realize it isn't November.) 

Considering 42 million Americans work while also juggling their caregiving responsibilities, we need all the help we can get. Here are the 10 tips to help the Working Caregiver I shared on Caregiving.com:  

1. Communicate with your employer.  Not everyone will be comfortable telling their employer about their personal situation and, sadly, this may not be a good idea with some employers. However, even though it isn’t even necessary to do so but it can be a huge help.  Remember, there are 42 million working caregivers so there is a pretty good chance at least some of the people you work with (maybe even the boss) are a working caregiver too.

2. Adjust your schedule.  Consider if a schedule change could help with the routine with your caree.  Maybe it would fit better with the caree’s needs to have an earlier schedule or a longer lunch. In my own experience as a manager, I have a secretary who requested an adjustment to her hours so she could see her mom in the morning and during lunch.  She wasn’t reducing the number of hours she works but making a slight change to when she worked. She is a valuable employee so we didn’t have any problem approving her request. The transition has been seamless. 

3. Know the leave laws. Ask the Human Resources Manager (or look in the employee handbook) to see if you are eligible for leave under FMLA (Federal Medical Leave Act). Additional leave laws and benefits vary from state to state but can be crucial in protecting your job. Unfortunately, not everyone qualifies under these leaves (for instance, sibling care is not covered under FMLA) so it is important to check with the HR Manager to find out exactly what you might qualify for.

4. Ask for help.   Working and caregiving can be exhausting.  Getting additional help for even a few hours a week could make the difference between burning out (fast) and feeling like the situation is manageable.  Check home health agencies, benefits provided by insurance or even ask relatives, friends or neighbors for help. 

5. Be an Exceptional Employee.  No one is indispensable and, of course, employers do have to comply with leave laws. Yet, you can buy a lot of good will by being the best employee possible which can help when asking for something the employer doesn’t have to do. 

6. Use the Employee Assistance Program.  If your employer has an EAP, you are in luck! This is a terrific service – free to the employee.  With just a phone call, there is a person waiting to talk with you and to provide you with all kinds of resources covering a variety of topics – including caregiving.   

7. Connect with others.  Whether it is with other co-workers in a similar situation or an online support group (such as Caregiving.com), reach out and talk with others in a similar situation. Caregivers are extremely resourceful and can lend a listening ear, helpful tips, support and encouragement. It might be tempting to cocoon yourself away from others but as a working caregiver we need all the connections with others we can get.  

8. Organize, Organize, Organize. Yes, I include this in every list I ever make – but it’s true! It is especially true if you are a working caregiver. Organization is not only important with the caree (keeping track of medications, doctor visits, vitals, contacts – plus a million more) but at work. If there are recurring projects, do everything possible to get as much of those tasks done ahead of time when there is a lull or a little bit of downtime.  As a caregiver, we never know when an emergency hospital visit or other emergency will strike. It will be a relief to know you are not completely behind on work if you stay organized and ahead of the game. 

9. Take a break.  I know – everyone says this and it can get annoying (especially if it seems impossible to do).  I am suggesting if you have to take care of caregiving duties on your lunch break (making doctor appointments or updating medication spreadsheets or visiting your caree), try to take a small portion of that break just for you. Read a couple of pages of a book (unrelated to caregiving). Close your eyes and take ten deep breaths. Stand up and stretch. Walk around the block. Walk to the corner if there isn’t enough time to walk around the block. Listen to your favorite music during the commute. Take those snippets of time (sometimes just a minute or two at a time) to nourish your soul and refill your bucket. 

10. Forgive yourself. You’re going to have bad mornings with your caree and sometimes they will follow you to work.  You will get cranky and tired at work. The stress will seem overwhelming and never-ending. Remember that it will be okay and tomorrow is a whole new day. Don’t waste time beating yourself up. You are not alone and you are doing extraordinary work as a working caregiver. Forgive yourself – you deserve it. 

There are so many other tips for the working caregiver but I would love for you to share your own tips. After all, we are here to learn from each other! 

Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with The Epilepsy Network (TEN)

November has just flown by! Today is the last day of Epilepsy Awareness Month and the interview today is with Tiffany Kairos of The Epilepsy Network (TEN).  One of Tiffany’s goals is to get the NFL to support Epilepsy Awareness.  Having grown up in Omaha, I am a huge football fan (Go Huskers!) but I recognize football carries with it the risk of a concussion – or several.   With the coach of a major college football program not keeping his battle with epilepsy and uncontrolled seizures a secret (thank you, Coach Jerry Kill of the University of Minnesota Gophers), awareness of epilepsy in the football community is growing.

(The only problem I have with Coach Kill is his team beat my beloved Huskers this year! Ouch!)

Let’s hope between Coach Kill and the work Tiffany is doing, the NFL (and the NCAA while we’re at it) will officially support Epilepsy Awareness Month one November.

In the meantime, please welcome Tiffany!

Tiffany Kairos, Founder
The Epilepsy Network

Robert’s Sister:    Tell us the name, mission and goals of your organization. 

The name of my organization is The Epilepsy Network (TEN). The mission of The Epilepsy Network (TEN) is to reach out all across the world to educate, advocate and break down the stigmas surrounding Epilepsy. In addition, our mission and goal is to UNITE those with epilepsy worldwide, uplift one another and stand strong to find a cure!

Robert’s Sister:  When was your organization founded and what was the catalyst for forming the organization? 

The Epilepsy Network (TEN) was founded in 2010. The Catalyst for creating The Epilepsy Network (TEN) came from my own journey as an Epilepsy diagnosee. In the beginning of my journey, I felt alone, confused, frightened and uneducated about my condition. I didn’t know of anyone else with my condition and I felt that I would encounter stigmatism. All of this became my mission to learn everything there is to know about Epilepsy, meet others with the condition and provide a network where people could discover more about the condition and that they were NOT alone. That they have support and they do not need to feel ashamed in any way about having Epilepsy. 

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or advocacy and how do you help fulfill that need? 

I see that the greatest need for Epilepsy Awareness and Advocacy is: Understanding, Compassion, Education, and Opportunities to Be Heard.

What The Epilepsy Network (TEN) provides to fullfill that need is ALL of this and much more. We provide educational imagery and material, Factual and Myth Breaking Imagery and material, Inspirational and News Related Articles from around the world, Opportunities to speak out and let your voice be heard, Opportunities through unique missions to attempt to involve companies to show support (NFL Support Epilepsy Awareness & Turn Google Purple For Epilepsy) and we continue to grow providing more ways to learn more and do more to create change on behalf of Epilepsy Awareness. 

Robert’s Sister:  What do you want people to know about epilepsy and the people you are working to help?

What I want people to know about Epilepsy is that there are a staggering 65 million men women and children all around the world diagnosed with Epilepsy. Epilepsy can happen to anyone anywhere and at any time. It’s something that must be given spotlight. Must be given recognition. Must be freed from its stigma that still exists to this day. 

Robert’s Sister:  What are some events your organization hosts in order to raise funds and awareness?

The events that The Epilepsy Network (TEN) actively hosts in order to raise awareness are NFL Support Epilepsy Awareness, Turn Google Purple For Epilepsy and our Shine Your Light For Epilepsy Awareness event which is currently in its 2nd year, happening every November all month long.

It is our hope that we may convince the NFL to support Epilepsy Awareness on the field in November just as they do for Breast Cancer Awareness in October. Especially with the rise in Concussions within the sport. It is also our hope with Google, that they will support Epilepsy Awareness by featuring a Google Doodle on their home page any specific day in November in honor of Epilepsy Awareness. With Google’s estimated 300 million interactive users per day, it would pose as a wonderful educational opportunity for Epilepsy Awareness. Our Shine Your Light For Epilepsy Awareness event rallies families and businesses around the world to show their support for Epilepsy by shining one or more Purple lights causing individuals to inquire about the light therefore providing an opportunity to educate about Epilepsy!

Robert’s Sister: Tell us about your successes!

The Epilepsy Network (TEN) has successfully reached out to thousands of supporters from around the world whether they be diagnosed, friends and/or family of. We have successfully achieved support and shout-outs from various celebrities and athletes which are located within our Facebook page photo albums, I and the network have been featured previously in the Epilepsy Advocate magazine for my personal blog (TiffanyKairos.com), I have acquired multiple proclamations from cities in Ohio and the state of North Carolina and we hope to continue to achieve many successes as we grow. 

Robert’s Sister:   How has epilepsy and your organization affected your life?

Epilepsy has affected my life personally in the most positive of ways. As foreign as this may sound, I am thankful for my Epilepsy and feel that it is my blessing in disguise. My diagnosis and my organization The Epilepsy Network (TEN) have humbled me and has ignited my heart and soul in a multitude of ways. I have learned to embrace life as I had never done before. It has made me a much stronger and more vocal individual, I am achieving goals I never knew I were capable of. I am doing what I always wanted to do which is give of myself and help others. It has opened my eyes to what I feel is my purpose in life. It is something that continues to grow me, teach me and strengthen me. It is something I plan to do for the duration of my life. 

Robert’s Sister:  Please tell us what your involvement with your organization means to you.  Has this affected your own personal purpose?

My involvement with The Epilepsy Network (TEN) as the founder means the world to me. It gives me the opportunity to journey Epilepsy on a personal level but also advocate for Epilepsy in a way that I see best for the world. As the founder, I choose not to copy or mimic what anyone else is doing but to advocate in my own unique and special way. A way that I hope others will embrace and love.

Robert’s Sister:  Please tell us more about the person answering the questions here. 

Tiffany Kairos, 27, is a daughter, sister, and wife diagnosed with Epilepsy. Tiffany is also an Advocate for Epilepsy (The Epilepsy Network). She enjoys life to its fullest. A devout Christian, lover of music, and art. She also enjoys blogging, detailing her journey with Epilepsy (TiffanyKairos.com) and giving selflessly to helping anyone in need whether it be within her community or around the world. 

Thanks to Tiffany for sharing her story and her passion with Robert’s Sister!  I hope one day to see more purple on the football field during Epilepsy Awareness Month and to see Google recognize Epilepsy Awareness Month as well. 

Tiffany can be reached through her blog, Facebook, Twitter (at either @TENofficial or @TiffanyKairos), as well as LinkedIn. 

Let’s spread the purple! (And, no, I don’t want to talk about the Huskers' loss yesterday.)