Advocating for my disabled brother, Robert, who has intractable epilepsy, unwavering faith and a delightful ability to declare everything excellent. Robert shows me everyday the power of the Magic of Excellent.

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Tuesday, August 13, 2013

You’ve Got Mail!

The first inkling I had of this
is when I took over his care and realized he had several
magazine subscriptions paid through the next century (and that’s only a slight
over-statement).

Robert happily reading his mail

Magazines about hunting, fishing, celebrities, wild animals
and architecture covered his coffee table (and bookcases and couch and floor .
. .). The only logical explanation is he loves to get mail (and obviously has
hoarding tendencies).

When he lived at New Home, several people asked for his
address so they could send him a Christmas card. He saved these in a pile on top of his
dresser through the holiday season and Valentine’s Day and Easter and summer .
. . and into the next holiday season. (They are now in a box with a few other
things he wanted to save.)

The mail he gets at my house is from Social Security, SSI
(as in, “Hi! You owe us
money!”) and doctor’s offices. I open that mail since I am his
representative payee and take care of his medical appointments and finances.

The Saturday mail was delivered and there was an envelope
addressed to Robert from Other Brother. I had one too but I was expecting it and knew
it was business-related. I assumed Robert’s envelope was a copy of that letter
(for whatever reason) so opened the envelope.

I saw immediately it was a personal letter so folded it back
up and placed it back in the envelope. (Well, okay, I read it - hey, how could I help it?) Robert was coming out of the bathroom and once he sat down and was
settled, I handed him the envelope.

You got a letter.

“Oh?”

Yep. It’s from Rich.

Robert slowly took the letter out of the envelope and
carefully unfolded it. (He didn't question why the envelope was already opened.) He put on his reading glasses and looked at the
envelope, back at the letter.

Robert looked up at me with a huge grin on his face: “It’s
from my brother Rich.”

Why, yes, it is. Isn’t
that pretty neat? (I was tempted to clarify that Rich was my brother, too, but
bit my tongue.)

“It’s excellent!”

I watched as Robert read the letter, smiling throughout. Rich told him about watching old home movies
and seeing a dress Robert had bought for Rich’s daughter for her first birthday. Robert giggled when Rich told him how cute
Jessica looked in the dress and told me, “That’s good she looked cute.”

Robert continued to read and chuckled some more. He looked
up and told me that Rich likes Rocky Road ice cream too, but only eats it every
two months!

“I like Rocky Road ice cream.”

I think he wanted to make sure I didn’t get any crazy ideas
about giving him ice cream only every couple of months so made sure to remind me he likes Rocky Road ice cream.

When he finished reading the letter he looked up at me with a big grin, chuckled a bit, and
said, “That was nice.”

He then carefully folded the letter back up and tucked it back
inside the envelope and set it on his table.

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Books for the Caregiver

365 Caregiving Tips: Practical Tips From Everyday Caregivers

Forever a Caregiver, by Trish Hughes Kreis

Tell Your Story

Do you want to tell your caregiving or epilepsy story? I would love to talk to you! Email me at robertssister@att.net and I will publish an interview with you. Telling our own story helps others while also helping ourselves. I look forward to hearing from you! Trish

About Me

Trish Hughes Kreis works as a full-time Legal Administrator and is a freelance writer, blogger and videographer who advocates on behalf of her disabled youngest brother, Robert. Robert lives with intractable epilepsy, has an unwavering faith and a delightful way of declaring everything excellent. Robert has lived with Trish and her husband, Richard, for four years and they do their best to keep him happy, healthy and, well, excellent.

Trish is an advocate for more research on the long-term effects of uncontrolled epilepsy as well as an advocate for expanding the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act.

Trish also does her best to navigate the maze of social services and government programs available to help Robert and keeps him entertained with an endless supply of word search puzzles and game shows.

Trish contributes articles and videos to the Assisted Living Directory and has written for Caring.com, The Intentional Caregiver, Today's Caregiver and the EmblemHealth “What Care Feels Like” microsite. Trish is a co-author and publisher of the "365 Caregiving Tips" book series written with four other experienced caregivers with the hope it helps other caregivers navigate the world of caregiving. Daily tips are posted on the 365CaregivingTips.com website.