Where Did This Come From?

I’m doing something a little different today. I’m winging it. Usually, I try to write about a current situation or something inspirational or something amusing (like slipping Robert a veggie burger). Tonight . . . I don’t know what’s wrong with me so I’m just writing. I was reading some posts and feeling very sappy and then started to cry. I haven’t cried in ages and actually...

Chocolate Shake or Bowl of Rocky Road Ice Cream? Choices in Caregiving

Last night, we treated Robert to a cheeseburger and fries. I figured since I had already slipped him vegetarian sausages and a fake burger over the weekend, I’d get him the real deal before he realized what I’d been feeding him. Or passed out from meat withdrawal. On my way out the door to the local fast food restaurant, Robert called out, “Can I get a chocolate shake, too?” Hmm.  Well, do you want a...

When You Become Them

“Caregiving is not easy. I can’t imagine care-receiving is either.” Dana, a new blogger on Caregiving.com, (Welcome Dana!) made the above comment and it reminded me of one of the “joys” of sandwich caregiving especially when your kids are teenagers. My kids see my parents and have heard our family history (on both sides of the family we live a long time (90′s-100′s) and die...

Garage Conversion – On Hold (For Now)

It’s difficult for me to admit defeat so I’m just going with “on hold.” We have overcome many roadblocks so far but we just can’t overcome all of them. Many of you know that last summer I was so fed up with New Home and Robert’s inadequate care, my family and I decided to convert our garage so Robert could live with us. It seemed like such a simple idea . . . Hubby and I discussed converting the garage...

Goodbye 2011

I’m a little behind in reflecting on the last year but I wrote and posted this on my blog last night and wanted to share it with you too (especially since you all figure so prominently in my 2011). I intended to do 2011 reflections on December 31. A reasonable date for such things. However, between hubby’s surgery, bringing Robert to our house for the long New Year’s weekend and being just a tad tired,...

Merry Christmas!

Merry Christmas! Confession:  After Robert woke up from his nap this afternoon and ate some candy from his stocking, I asked him to finish his last Christmas card. Yes, I know today is Christmas. No more Christmas cards! Please! Robert was so close to having them done last Sunday. So close!  He was down to two more to go when we had to leave to make it on time to a Christmas program at church. Robert would...

Is It Christmas Yet?!

It better not be – Robert isn’t done with his Christmas cards yet!  (Um, mine are “in the mail.”) It’s been a busy month! This is the busy time of year at work which coincides nicely with the busy time of year in my personal life – add in a dash of taking Robert to neurology appointments, dealing with contractors and electricians and permits (which may all be for naught – it’s a long story and...

An Early Christmas

I’m looking forward to the Progressive Blog Party this year, especially after days like today. Mom and Dad seemed to push all of my emotional buttons today during my visit with them.  Dad is increasingly tired and now having trouble just sitting up.  He speaks when spoken to but when he opens his eyes there is no sense of recognition.  When asked who I am, he just stares blankly.  He hasn’t spoken...

Giving Thanks

“Rejoice evermore. Pray without ceasing. In everything give thanks…” [1 Thess 5:16-18a] The past month has given me much to be thankful for… I am thankful for the legacy my brother has left me. I am thankful that I got to see him just before his death. I am thankful for my best friend’s young son walked up and gave me a hug at my brother’s memorial service. I am thankful for the...

Piecing Together the Puzzle of the Brain

Robert has had uncontrolled epilepsy his whole life. At 46 years old now, after numerous head injuries (even with a helmet – yeah, that’s a neat trick), surgeries and medications, Robert is not quite the person he used to be. Robert finished high school and even took a few community college courses many, many years ago. Now, he falls asleep reading a book after two pages (I’m trying to not take that...

Book of the Month

Wow! I am honored, thrilled and grateful to have Forever a Caregiver chosen as the October Book of the Month Club pick on caregiving.com. Denise will talk with me about the book tomorrow (Tuesday, October 25) at 12:00 p.m. PDT.  You can listen here. Forever a Caregiver is a book that took me ten years to write but was actually a lifetime in the making. (Still – 10 years? Sheesh!). Denise was one of the many...

This is a Seizure

I have been trying to capture one of Robert’s seizures on video for a while. I thought it would be one way to raise awareness about seizures and make them (hopefully) a little less scary. I kept waiting for the just the right opportunity to get the “perfect” seizure (which, to me, meant Robert was sitting down, I was able to capture all of it, the surroundings were very calm and serene, my house wasn’t a...

Approval!

Finally, after much longer than I ever expected this process to take (keep in mind, I thought Robert would be living with us by now), we have an approval from the Planning Department of our City for our garage conversion plan! You’d think I’d be jumping up and down celebrating but there was a “condition” attached to it. We are allowed to convert our garage into a bedroom and bathroom for Robert but the...

Objectives for Robert; Objectives for New Home

Robert has his second ISP meeting today at New Home. This is where everyone involved in his care (nurse, house manager, supervisor of house manager, speech therapist, regional center rep and me) decide on his “objectives” for the next three months. The last one was just after he moved in to New Home last February (which I realize was more than three months ago but, after the first meeting they wait for the...

Just Call it a Day When Even Baking Chocolate Chip Cookies is Difficult

I wrote this late last night but was too pooped to post it here. This was my day yesterday . . . I haven’t baked cookies in a while but, by now, I have baked a few batches in my life – it’s really not that hard. Aside from the occasional (okay, always) ability to set off the fire alarm (keep in mind, with very few actual fires), I can make a pretty tasty chocolate chip cookie. Today, the universe really tried...

Helping Family Caregivers Legally Expand the Definition of Family

Denise inspired me to write this post which I am cross-posting from my www.robertssister.com site. Denise, you inspire me daily! Denise M. Brown, founder of Caregiving.com, caregiver advocate and my good friend was recently quoted in a New York Times article addressing the challenges of caregiving while working. As a caregiver who is both an employee and a manager, I have a bit of a unique perspective about...

How is Epilepsy Treated?

I hope you don’t mind if I continue my “education” series about Robert & Epilepsy.  At Robert’s recent EEG appointment, I overheard the nurses talking about epilepsy and how it is a “forgotten disease.”  They said someone needs to shine a light on epilepsy and thought if a celebrity had a child with epilepsy it would help raise funds for research.  I don’t know about that since...

Valuing What We Do, What They Do

Since Lisa’s mother died two years ago, my role has shifted. I still give Lisa a lot of direct care, but the others I work with– my mother (who is going deaf and blind), my step-dad (who has progressing dementia) and my brother (in a nasty and negative mid-life crisis)– need assistance and/or support, but not direct care, thank God. Every once in a while, I get a call to drive my mother or brother somewhere....

Caregiver I

My family has a bit of identity crisis when it comes to me. For years, even before my wife’s death, my kids referred to me as MaPa. In the absence of my wife I took on the duties of Mommy and Papa and in their mind was often indistinguishable. This week my Mom began piling on to my confusion. Our visits this summer have settled into a predictable routine: I quietly walk up behind Mom and Dad, who are briefly...

“Just” a Haircut?

Getting a haircut is not a huge deal for most people. I personally love to get my hair done because it’s an excuse to sit back and relax and have my scalp rubbed while amusing the stylist with the result of my feeble attempts to cut my bangs (“Trish, please come in for a quick bang trim between cuts! You don’t have to live with crooked bangs!”). If Robert doesn’t keep his curly locks cut, he tends to...

Re-Use the Basic Stuff as Needed

Caregivers take different routes to this calling. Some are thrust into it suddenly, some see it coming like impending disaster, and some volunteer for it. I doubt that anybody sees all the trouble they signed up for when they took the job. Once we’re in the middle of the work, most of us see that we’ve bitten off, if not more than we can chew, more than we thought we bit off. That realization almost always...

Still Missing Her

Today’s #eldercarechat on Twitter — hosted by Seniors for Living and our one and only Denise — made me think about my grandmother Ruth. The chat was about how to care for loved ones with dementia. Ruth (who I call Dibi) is in the late stages of Alzheimer’s, and even though her symptoms started a decade ago, my family is still coping. Still grieving. It’s a long, cruel disease. I’d like...