Epilepsy Awareness Month: Preview

I have something very special planned for Epilepsy Awareness Month this year and I hope you are as excited as I am!

For years I have had the dream of creating a Reality Show about caregiving as well as making a Documentary about caregiving and Robert.  Sure, the Reality Show about caregiving won’t be as salacious as the Kardashians or as over-the-top as any of the Housewives shows (or so I’ve heard) but it would be real.

All I needed was a camera.

As a huge surprise this year for our anniversary, Richard bought me a camera! It isn’t a professional, filmmaker camera but it is going to do the trick to get me started.  I consider it my “training wheels” camera and I have been reading the instructions and playing around with it and filming everything in sight.

The odd thing about my dream of creating a Reality Show or Documentary is I have never made a film in my life.  I created plays when I was a kid and I was an extra in a few television shows and movies when I was in my twenties but actually making a film? It’s been a dream of mine but I have no idea why and it just won’t go away.

I don’t question my gut so I am going to do a warm-up by using the camera during Epilepsy Awareness Month.  Throughout November, Robert will tell us stories about how Epilepsy has impacted his life and will tell us a little bit about his daily routines. Richard will talk about being a co-caregiver and how having his brother-in-law with us has impacted his life. I’ll share about my day as well but I prefer the “behind the scenes” camera time.

Luckily, Robert is a ham so I’ll be lucky if I can get him to stop talking!

All of us will answer any and all questions about Epilepsy and caregiving so please use the comment section below to leave your questions or what you’d like Robert (or me and Richard) to talk about.

While I don’t have a person holding a huge microphone or a director’s chair with my name on it, I do have a camera and Robert and a lot of stories. I have also been practicing my “Quiet on the set!” and “Rolling!” directives.

(Somehow, the dogs don’t quite understand what that means yet . . .)

I hope you enjoy the series in November. Please share and help us spread Epilepsy Awareness & Education! 

I Never Thought I Would . . .

It’s hard to believe my caregiving for Robert started five years ago. Before I became involved, our dad helped him with his finances.

Mother-in-law, Carol, with Robert

Which means when I took over caring for him I had to fix a lot of financial issues.

Caregiving for Robert has kind of crept up on me.

It started one Thanksgiving with Other Brother and I dealing with a homeless woman Robert and his companion brought home and who gave Robert a black eye. Around this same time, Robert was battling an infection and he was hospitalized a couple of times.

Other Brother visited him since he worked in the same city as Robert was hospitalized and I was in contact with his medical team.  Once he was discharged, I took Robert to a couple of doctor appointments. The infection kept returning and became life-threatening.

Then it was an avalanche of caregiving: a trip to the emergency room; emergency surgery; several weeks of IV antibiotics; discharge to a Skilled Nursing Facility; move to an Assisted Living Facility; a few more hospital visits – and that was all within four months.

Five years later, Richard (hubby) and I are caring for Robert full-time while he lives with us.

It is hard to believe all this has happened in five years.  It is also difficult to believe the things I do now that I never thought I would. 

This can only mean one things: it’s time for a list!

Before caregiving, I never thought I would . . .

• Be caregiver to Robert;

• Have a husband who was willing to help care for my disabled brother;

• Know so much about epilepsy (even though Robert has had it his entire life);

• Be strong enough to discuss Robert’s care and treatment options with his doctors;

• Be strong enough to stand up to an emergency room nurse who was giving Robert the wrong medication;

• Do so much laundry!;

• See Robert using a walker;

• See Robert making nurses laugh out loud with his jokes;

• See Robert live to middle-age;

• Spend more time with Robert than I do Other Brother (who I am much closer to);

• Be able to pronounce the slew of medications Robert is on. And be able to recognize them by sight;

• Mix water and juice with a powder so that it is “nectar thick;”

• Have so much Rocky Road Ice Cream in my freezer;

• Teach Robert how to be patient with a puppy;

• Give Robert a bath;

• Clean Robert after an accident. Every day. Sometimes several times a day;

• Watch my husband do the same;

• Enjoy Family Feud and Jeopardy as much as I do (shh! Don’t tell!);

• Know enough about Skilled Nursing Facilities and Assisted Living Facilities to help others;

• Did I mention all the laundry?;

• Wonder so much before going out if there will be an accessible bathroom;

• See my non-affectionate brother, Robert, hug my daughter when she visited recently;

• Wonder: Hey! Where’s my hug?!;

• Be a published author of a book about caregiving and family;

• Be an author of several articles on caregiving;

• Keep such an eagle eye on a cough and congestion – willing the bacteria to stay away;

• Make so many new friends who are all caring for someone with compassion and love or helping those who do;

• Give up my family room and downstairs bath to accommodate Robert;

• Slow down enough to let Robert participate in a conversation and answer questions;

• Fill so fulfilled from doing something I never had planned to do;

• Watch a beautiful friendship develop between Robert and my mother-in-law, Carol;

If you are a caregiver, what is something you never thought you would do?