What Epilepsy Means to Me: More Epilepsy Resources and Organizations

It may not be Epilepsy Awareness Month (No! It's go-crazy-for-Christmas month!) but there were so many resources people shared, I thought it would be helpful to have them consolidated in one place.

A favorite photo from Pinterest

At the end of November we recapped the organizations and resources that were founded by some of the people interviewed throughout the month. The ones included in this list are the other resources that are important to the people who were interviewed plus a few others I found that might be useful.  

Teresa's Story. Teresa shared her story of how she was diagnosed with epilepsy and then 15 years later, watched as her mom was diagnosed with it too. Teresa supports and has found help through these organizations:

The Epilepsy Foundation of Greater Chicago;

Thresholds (Emotional/Mental Needs);
Chronic Babe (CI Support);
Rest Ministries (Christian CI Support);
Caregiving.com (Caregiver Support);

Leslie’s Story.  Leslie had an excellent recommendation during her interview.  Leslie says, “I would recommend one joins local, state, and national/international organizations, both for seizures in general, and one's type of seizures specifically. Any of these organizations can give you valuable information on how to care for and live with epilepsy, how to find the best doctor and treatment options available, and give you support.” 

 

And because Leslie really tells it like it is, she follows that guidance with, “Because believe me, you're going to need it.”

Susan and her dog, Nicky.  Susan’s story about her dog, Nicky, who had epilepsy had me searching for information about dogs and epilepsy.   A few websites stood out for me:

“Real Dogs, Real People” (they have a section on their website about canine epilepsy); 
Canine Epilepsy Network; 
Canine Epilepsy Resource Center;

Kathy Patterson and her daughter, Jenny.  Kathy tragically lost her 18 year old daughter, Jenny, to epilepsy.  At Jenny’s memorial service, Kathy and her family requested donations be sent in lieu of flowers to the Epilepsy Foundation. 

Gwen told us about her daughter, Cindy, and shared social services agencies that have been helpful to them. 

Gwen tells us a little bit about them, “Cindy’s disabilities have enabled her to be put on Social Security Income. Cindy is very fortunate to have ALTA helping to support her.  They helped her to go to job training when she graduated from high school.  They have supported her in her need to have 24/7 care at her house.  The company InAlliance supports her with trained help to deal with her health problems and work to train her to someday may be self-maintaining, not likely but a nice goal.”

To my knowledge, our family wasn’t aware of the services ALTA provides so Robert wasn’t a part of their organization until just a few years ago.  I have found them to be extremely helpful to us in finding various resources for Robert (such as his day program) and am grateful he is now involved.

Helen of Manchester (I love having a friend in England!), supports Scope.  Helen said in her interview, “I've been a member of Scope for a long time. This organization is a charity based organization. They helped me over the years with holidays, day trips. I've given back on some occasions by collecting money for their charity.” 

The list will grow as more people tell their story about epilepsy or caregiving.

I am planning to run more interviews throughout the year so if you’re interested in telling your own story about epilepsy or caregiving (or know someone who wants to tell their story), please contact me at robertssister@att.net. 

The more we share, the more we help each other!

It’s Party Time!

For someone who claims to be fairly anti-social and introverted (me), I do love a good Christmas party!  We have two parties planned for today as well as one or two several items left over from my to-do list yesterday. 

Our first party is the online “Caregiving.com Progressive Blog Party.” 

 

I participated last year and had so much fun!  I was introduced to new sites helpful to caregivers as well as had fun visiting other caregivers with their own blogs.  It’s interesting to visit the other caregiver blogs because I learn so much more about caregiving!  Whether it’s how to have a sense of humor even while watching Hubby disappear into Lewy Body dementia or learning how to gain the strength it takes to help your child through an undiagnosed heart defect which eventually led to Pulmonary Arterial Hypertension and a possible future heart/lung transplant or teaching how to take a calm, healthy approach to caregiving while also educating about senior LGBT caregiving issues, all have something for someone.  

 

Other caregivers are participating as well and more usually join throughout the week.  If you are a caregiver and want to join, please visit here to find out all the details.

 

Oh!!  And there are prizes!  Who doesn’t love to get a gift at the holidays (or any time!). Caregiving.com is hosting this blog party and there are door prizes for visiting and commenting on that site. 

 

Party two is going to be a little trickier.  Robert was congested yesterday but didn’t seem to be feeling too sick.  He even got a few of his Christmas cards done (Okay, he did five.  Five!  Considering his list has grown to 40+ over the last few years, some people may be getting Easter cards).  He loves doing the cards (I’ve asked him if he wanted to skip it and he always says, “no.”).  He also likes to write a personal note in the cards.  A long note.  A painstakingly very long note.  He can’t just write, “Love, Robert.” 

 

Easter is our goal date now . . .

 

This morning, Robert woke up with a fever, cough and one of his eyes almost swollen shut (which I’m assuming is from a sinus infection).  I’m letting him sleep in and haven’t yet made the call whether or not we attend Party Two.  Hubby’s family gets together for great food (they never disappoint in that area!) as well as a fun ornament exchange.  Robert is always invited and it’s fun to see people I don’t get to see often enough.  Hubby and I usually keep our eyes out for clever ornaments throughout the year so we can pick just the right one for the party. I would hate to miss it but, unfortunately, caregiving throws a lot of curve balls and doesn’t really care what time of year it is (or what party might be missed).   

 

I’m hoping Robert will be feeling better with a little more sleep.  There’s the promise of meaty lasagna which he will not want to miss!  Robert is definitely not anti-social or introverted – the boy loves a party and, well, food. 

 

Plus, he has to get better so he can work on more of his Christmas/Easter cards today!

 

Hope you can join us this week for the holiday (blog) party!

 

Working and Caregiving: Communication, Flexibility, Creativity

On today’s to-do list:

·         Decorate the outside of the house;
·         Start and finish Christmas cards;
·         Pick up Robert and bring him to our house;
·         Help Robert maneuver through the myriad of Christmas decorations I have (hopefully) just installed;
·         Have Robert start his Christmas cards; Expecting him to finish in one day is unrealistic – actually expecting him to finish before Christmas is a stretch; (Yikes! I should have started a month ago!)

The list goes on but you get the idea. It’s the holidays and there’s a lot to do!

Before tackling my to-do list today, I joined Denise M. Brown of Caregiving.com on her internet radio program, “Table Talk.”  I join Denise the second Saturday of each month to talk about the issues facing working caregivers.  As Sally Abrahms, a blogger on AARP.org, shares from the AARP Public Policy Institute, “61 percent of family caregivers age 50-plus work either full-time (50 percent) or part-time (11 percent).”

That’s a lot of caregivers impacted by policies and benefits in the workplace that may or may not be sensitive to the needs of those caring for a family member or friend.

On the show today, Denise and I talked about how the holidays add extra stress to people already stretched thin with their responsibilities: work, family, caregiving, self and now the holidays.  How does the working caregiver juggle not only these responsibilities but the very real possibility of the unexpected (a hospital stay or illness) happening?

For starters, with communication, flexibility and creativity.

Employers don’t always know what an employee may need and it’s going to take a while for the law to catch up to the ever changing needs of both the employer and employee.  I know this first-hand after fighting for an expanded definition of family under CFRA.  Sibling care is not covered under either FMLA or the California version of it (CFRA).  If the law hasn't caught up yet, then employees need to ask for what they want from their employer.  Whether it’s a more flexible schedule or paid sick time to care for a relative not covered under FMLA or CFRA, communicating the employee’s needs to the employer is the first step to change.

Working caregivers can be the hardest working employees an employer has.  Add to this the benefit of having long-term employees and these are the employees employers do not want to lose.  Flexibility – from both sides – is essential to making this working caregiver situation work. 

Coming up with creative solutions so the working caregiver does not feel compelled to quit their job and the employer maintains a high quality employee is not easy but it is possible.  Flex-time, job sharing, a combination of working from home and the office are just a few creative solutions. 

Caregivers are very adept at creative decision making and problem-solving in their caregiving role and there’s no reason to think they wouldn’t be in workplace either. 

In our conversation this morning, Denise tells a funny story about how she “creatively” managed her full-time and part-time jobs. 

As a working caregiver, how do you manage both the caregiver and employee roles?  What creative solutions have you suggested or implemented as an employee or employer?  I’m interested to know how people have resolved this conflict without leaving the workforce. 

If you’d like to listen to the show today, please click here.  

I’m off to tackle my to-do list!  Wish me luck or the next picture I post could be me tangled in holiday lights and Christmas cards!

What Robert Loves About Christmas

Robert Loves Christmas!

Okay, I admit, Robert isn’t the only one in the family who loves Christmas (and Thanksgiving). 

My daughter is CRAZY for Christmas (okay, yes, so am I). 

Tree #2

For years I have wanted a second, smaller tree in the corner of our family room and, fighting the “oh my god you’re going to extremes/lost your mind/are a Christmas nut case” voice in my head, we got one this year.

Having the second tree helps so we can use all the ornaments we want to use (rationalization) and gives the room more holiday cheer than just the garland over the fireplace and since Robert is the family room quite a bit, this brings the holiday cheer to him (more rationalization).

Getting into the holiday spirit, I thought it would be fun to ask Robert what his favorite part of the holiday was.  On the way to Day Program, when he usually busily works his word search puzzle, I brought up the subject.

Me: What’s your favorite part of the holidays, Robert?

“Christmas.” (He’s so literal sometimes).

Back to the word search puzzle.

Me: Well, what’s your favorite part of Christmas?

“Everyone gets gifts.” (Sweet that he is thinking of all of us getting gifts, not just him).

Back to the word search puzzle.

Me: What else?

“Word search puzzles.”  (Hmm, is he trying to tell me something?)

He continues searching for the next word in his book.

I’m relentless: I mean about Christmas.

“Everything. I love it all.”

Back to his word search.

Alright, I can take a hint (finally).  It wasn’t exactly the warm, fuzzy talk about the holidays I was expecting but who can argue with, “I love it all.”

Now I wonder what I should get him for Christmas . . .