Monday, October 24, 2011

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 Brown, founder of Caregiving.com, 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 people who encouraged me to publish this book and who ignored my disclaimers along the way (I can be quite persistent with my disclaimers). I am very grateful to Denise, my family and friends for helping me see this book through to completion and publication instead of indulging the coward in me and letting me safely keep it to myself. My hope is that others will see their own family experiences in this book and find acceptance of their family roles and experiences.

Now that I actually know what caregiving is, I realize I was born into this caregiving role. Everyone has family roles and mine happens to be the one where I take care of people. Maybe it’s the control freak in me but I enthusiastically accept this role although, I admit, it was not always something I wanted to do. As a teenager, keeping a watchful eye on Mom so she didn’t sink further into depression (and attempt suicide again) was not something I would have volunteered to do or wish on anyone else for that matter. Yet it was one of many experiences that I accepted, managed to get through and which I actually appreciate for making me the person I am today.

“Appreciate” may seem an odd word choice but I wouldn’t want to be anyone else and those experiences helped shape who I am. For me, appreciating these family experiences (and family itself) is the perfect word.

That complete acceptance of my experiences made me a better caregiver to Mom when she was terminally ill twelve years ago and helps me be the best caregiver I can be to Robert today. Don’t misunderstand – caregiving is not easy and it certainly isn’t always (or even mostly) roses and butterflies and lollipops but taking care of family is what fulfills me and I wouldn’t have it any other way.  Call me crazy!

Please recommend this book to anyone who finds themselves in a caregiving role or who has struggled with accepting some of the mess that comes with being a part of a family.  I'd love it if you listened tomorrow too!

Friday, October 21, 2011

25 Random Facts About Robert’s Sister (yeah, that’s me)

The other day I posted 25 Random Facts about Robert and promised a few random facts about me too. Random facts in random order. I wonder how many of these are a surprise to my friends and family?

1. When I was 13 I had a pencil thrown at me by a little girl I was babysitting and the lead end was briefly stuck in my eye. (What is it about my family and getting poked in the eye? Obviously, Mom should have made us all wear protective eyewear).

2. I have two younger brothers. Robert is 5 years younger than me, is disabled and has epilepsy. Other Brother is not quite 2 years younger than me and is a very successful partner in an actuarial firm. Robert beats us both at cards.

3. I had heart surgery when I was 18 months old to repair a hole in my heart that I had been born with. My daughter had a similar problem when she was born and had her heart surgery when she was only 2 months old.

4. I still have a few baby teeth and I never got any wisdom teeth. (No comments from the peanut gallery, please). :-)

5. I volunteered at the Suicide Prevention Center when I was 18 years old even though their minimum age to volunteer was 21. I was able to talk my way into the job (if you read my book, you'll know why).

6. During college, I worked for Greenpeace soliciting donations door to door and was yelled at numerous times. My favorite thing yelled at me was “nuke the whales!” People can be crazy!

7. I failed beginning French in college and now worry how I’ll manage to get around when I go to France one of these days.

8. I had two majors in college: Psychology & Peace/War Studies. I thought working at the UN would have been a pretty cool job.

9. In my twenties, I acted in local theater productions and was an extra in a few movies and television shows. It was a blast!

10. Until the 6th grade, I was called Patti. I decided I didn’t like that name any longer so asked everyone to start calling me Tricia. Now it’s just Trish.

11. I really like cows. It may have something to do with the fact I grew up in Nebraska.

12. One of the houses I grew up in was across the street from the famous Boys’ Town farm in Omaha. We could smell the “fertilizer” when the wind shifted.

13. I love making snow angels.

14. I love animals and currently have 2 dogs, 2 cats and an aquatic turtle.

15. I was the oldest and only girl cousin on my dad’s side of the family until I was 12. This meant I wasn’t afraid of boys and could hold my own in a game of touch football.

16. The smoke alarm usually goes off when I cook something. My mom gave me a fire extinguisher as a present once.

Thursday, October 20, 2011

Ask and You Shall Receive!

When New Home told me they no longer had television I wondered how Robert was going to fulfill his spiritual needs. Robert is in the habit of watching sermons on television and will actually watch a couple of hours’ worth on Sunday morning if he has the opportunity. He always wears a white dress shirt on Sunday, keeps his Bible close to him along with a pad of paper and pen so he can write down each verse referenced in the sermon. Robert does this whether he is watching a sermon on television, in person or at a funeral. He has several pads of paper filled with Bible verse references.

Sometimes I can get too caught up in the antics of New Home and end up being a little down in the dumps or extremely frustrated with them. New Home promised weeks ago to reinstate television and I keep hearing “it’ll be any day now” but nothing seems to be happening. The residents are still watching the same movies over and over again (luckily, the DVD player works). Robert had a few movies of his own that he shared with the others. Still, how many times can you watch Annie?

This latest problem of not having television is less of a problem now thanks to the generosity of a few churches.

At a recent meeting with New Home, it was suggested that churches might be willing to donate a DVD of their sermons to Robert. Excellent idea! I researched several of the big name churches who broadcast on Sunday to see if they had an avenue to request a donation of a DVD or just had an email address listed on their website. A few churches didn’t have a person to email directly but had a form to complete in order to ask a question or make a request. Many of these links didn’t work which was a little startling. (Hopefully, someone who is in dire straights doesn’t decide to email these particular churches. “I’m so sorry but God’s internet isn’t working right now!”).

To those I could get through to, I requested a DVD of a sermon and promised a mention on my blog if they were willing to donate the DVD to Robert. I explained his situation and asked for whatever they could send. One church turned me down and instead asked me for a donation.

Not letting this discourage me, I sent off a few more emails. Two churches responded positively and have already sent a few gifts to Robert! The Joel Osteen Ministries of Lakewood Church in Texas, sent Robert a DVD entitled, “You are an Overcomer.” Boy, isn’t that the truth! I told Robert he was sent a DVD but haven’t given it to him yet. He gave his standard understated response of “That’s nice” when I told him about it. He may not be able to ooze enthusiasm but he will watch it intently (and probably several times), Bible beside him with notepad in hand.

InTouch Ministries also generously sent Robert two CDs with sermons by Dr. Charles Stanley. When Robert visits us, he watches Dr. Stanley’s program so will really appreciate having these CDs to listen to.

New Home may be on week 4 and counting of trying to get their television back on but while they move at a snail’s pace to get the necessary approvals and wait for the cable guy, a few churches have come to Robert’s rescue and made him very happy. For that, I am extremely grateful!

Monday, October 17, 2011

25 Random Things About Robert

One of my favorite bloggers who is also an amazingly talented artist, Franziska San Pedro,  recently created a “25 Random Things About Me” post.  It was entertaining (mostly because it involved donkeys), it was very open (read it and you’ll see what I mean), and it was enlightening. I learned so much about this delightfully exuberant person in just five minutes!

I’d love for you to know more about Robert and this list is the perfect way to do that. (I promise to create something similar about myself but for now, this is all about Robert).

1. Robert stuck a fork in his eye when he was 6 or 7. Other Brother, Robert and I were having a picnic in our backyard and Robert was goofing around and stuck himself with a fork. He thought the eye patch he got from the ER was pretty cool! (Don’t worry, there wasn’t any permanent damage).

2. Robert’s favorite color is blue.

3. Robert’s favorite television shows are Wheel of Fortune and Jeopardy. Of the two, he likes Jeopardy the best.

4. Robert is very committed to his faith and considers himself Baptist. I know of no other Baptists in our family.

5. Robert has had epilepsy his entire life.

6. When living independently, Robert sent money to someone in Jamaica because they called him and asked him for it. I am still wishing for Karmic justice on this person for taking advantage of a disabled person.

7. As a child, Robert loved to play with LEGOs.

8. Robert can tell you all about being awake during his brain surgery in 1990 and how happy the surgeon was with him and his progress afterwards. He usually can’t remember what he had for lunch.

9. Robert had a seizure while in a swimming pool when he was 15. After being pulled out, he was in a coma for a few days and says God talked to him telling him it wasn’t his time yet. It certainly wasn’t!

10. Robert’s favorite meal is a cheeseburger and fries with Rocky Road ice cream for dessert.

11. Robert says he can sometimes fight off seizures. I believe him.

12. Robert’s medications currently include Depakote, Clonazepam and Zonisamide (for seizure control) and Levocarnitine to improve liver function.

13. When Robert was little he loved to carry around a blanket (the kind with the silk on the edge) and just rub the silk. It was very soothing for him.

14. Robert always wears button down, dress shirts. Preferably blue.

15. Robert loves 7-Up and is never without a bottle of it.

16. Robert can’t drink caffeine because it may trigger a seizure but he likes decaf coffee.

17. Robert enjoys doing Word Search puzzles.

18. When in the car or riding the bus home from his Day Program, Robert counts school buses and “diesel trucks.”

19. My parents took Robert to Switzerland when he was 8 to see a renowned neurosurgeon to see if he could cure Robert’s epilepsy with surgery. The doctor couldn’t do anything.

20. Robert’s best friend in elementary school was run over by a bus in our neighborhood. It was a horrible, awful thing.

21. Robert lived with a woman he considered to be his wife for almost twenty years. She also had epilepsy. When Robert could no longer live on his own and I moved him to a facility near me, she broke up with him.

22. Robert loves jewelry (rings, watch, bracelet, necklace with a cross) and wants everything to be 14-carat gold.

23. Robert is very routine-oriented, bordering on OCD.

24. Robert absolutely loves to play Kings Corner (a card game) and beats me 99% of the time.

25. Robert is the only one in the family with curly hair. I always wondered what the mailman looked like. :-)

I'd love to hear a few random things about you if you'd like to share in the comment section!

Thursday, October 13, 2011

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 mess, nothing got broke and no one got hurt).

That’s not how seizures happen. Seizures come on unexpectedly and sometimes things get messy. Dinner plates almost end up on the floor, for example.

Unless I have a camera trained on Robert 24/7, I can’t capture the beginning of a seizure. A young woman  who lives with epilepsy and is on a mission to raise awareness about seizures and epilepsy actually did this by setting up a webcam while she slept which captured her seizures. I commend her for her bravery and for the inspiring way she is living her life in spite of intractable epilepsy.

Robert’s seizures are called Complex Partial Seizures. He doesn’t convulse but he sometimes twitches his right hand or tugs at his clothes. If he has one while standing, he falls backwards (which is why he wears his super deluxe helmet). One time, he yelled during a seizure but what he was yelling about wasn’t clear and he had no memory of doing it. He actually rarely remembers having a seizure unless he wakes up on the floor. Only then will he admit to having a seizure. Otherwise, his standard answer to “how are you, Robert?” is “I’m doing well. No seizures.” There’s no point in correcting him since it makes him happy to believe he hasn’t had seizures in a long while. I don’t see the harm.

I finally let go of the idea of trying to film a seizure in the perfect setting and decided to post a short video of him having a seizure when he was at our house this past weekend. My husband and I were sitting down to dinner with Robert and Robert started to say grace, as he does before each meal. He prays he doesn’t have any more seizures and I think he prays that I go to church more often (he mumbles, so it’s hard to be sure). God, apparently, is ignoring his requests on all fronts.

The prayer was interrupted by a seizure.

The video shows Robert, hands clasped in prayer, head to one side, having a seizure. It shows a dinner of a lot of pasta and canned peaches – don’t judge (to add to this nutritious meal, chocolate ice cream was on the menu for dessert). The video also shows me running to catch Robert’s dinner plate so it doesn’t end up on the floor. Seizures are messy and unexpected and that’s just the way it is.

One thing I learned at the neurologist’s office yesterday is that once Robert is able to respond verbally, then the seizure is over even though he is still in a state of confusion (you’ll see that too on the video). I thought the confusion was a continuation of the seizure since he is pretty out of it. I’m still learning about seizures and epilepsy and hope this helps you learn a bit more about them (and us) too.

By the way, Robert said it was okay to post this.

video

Monday, October 10, 2011

Caregiving Seeps into the Movies

With 65 million family caregivers in the United States alone, we are bound to see more and more movies with themes involving caregiving plus a few more with passing references to caregiving. Or, it’s entirely possible, that I now see caregiving everywhere since I am more involved with other caregivers and involved in caregiving itself. Kind of like when I bought my VW Jetta, all I saw on the road were Jettas. Everyone owns a Jetta! (Okay, not really. It’s a little trick the mind plays on us known as “the red car syndrome”).

Whatever the reason, caregiving has made it into the movies (and, no, I don’t think Misery counts).

On our day of little miracles we saw the movie 50/50. The movie is about cancer. And it is hilarious.

Yes, cancer and comedy do go together – who knew?!

I love a movie that makes me feel like a better person just for having watched it. Seth Rogen is not exactly someone I thought I ever would admire or be in a movie that moved me so much. He’s not the draw to a movie for me and I certainly don’t run out to see a movie because he’s in it. Matt Damon on the other hand – sign me up! (Although I have to digress to say he was completely wasted in Contagion and I would love it if Warner Brothers would kindly send me my money back).

Seth Rogen’s humor is a bit extremely crass and we all know crass humor can’t have any sort of redeeming quality, right? (yes, that’s me being judgmental and just a touch sarcastic).

50/50 is about a 27 year old man (an understated Joseph Gordon-Levitt) who learns he has a rare form of cancer. Really awful news to someone who declares he can’t have cancer because, “I don’t smoke. I don’t drink. I recycle.” In that short scene he sums up what anyone listening to a devastating diagnosis would think: this isn’t fair!

As I’ve recently learned, Seth Rogen is not just a comic whose range involves extreme profanity and acting like a complete jackass, he is a sincere and vocal advocate for education about Alzheimer’s disease . The film includes a character living with Alzheimer’s and touches upon the challenges of spousal caregiving. 50/50 also shows us that not everyone is cut out for caregiving yet others go about it in an unconventional yet loving and effective way.

I don’t want to say much more about the movie because I’m afraid I might give too much away (I’d be a terrible movie reviewer) but I do want to commend the writer, Will Reiser, for his light approach to such a serious subject.

The movie values friendship, love, family and humor and shows us there is no “right” way to be supportive. What’s important is being there.

Do you have an unconventional caregiving story to share? Does humor help you in your caregiving or is it all let’s-get-down-to-business-this-is-serious-stuff?

Sunday, October 9, 2011

Seeing the Miracles

Friday started off with one of my cats jumping on my bed to wake me up and then proceeding to pee on my foot. Thanks, Milky Way, I’m awake now.

One could reasonably assume this was the worst part of my day. Don’t be so hasty, it was not. Expensive car problems, slipping and falling flat on my face at work and handling more complaints than normal at work vied for the top spot. Goodbye money, hello bruised knee (and ego). TGIF, indeed.

Saturday was completely different (thank goodness!). I was able to spend time catching up with a few blogs that I love (http://www.atticusuncensored.com/, for one) and a website that I could spend all day on (http://www.caregiving.com/). Both have discussed miracles in recent posts (http://www.caregiving.com/ even has a “miracle meter” to keep track of miracles people experience).

Miracles come in both big and small packages. Sometimes they sneak in between some crappy days and could be easy to overlook if you’re not paying attention.

Saturday morning continued with me catching up on tweeting. Tweeting? Really? I know – who knew this person who can barely turn the television on (and will just about give up if there’s the added component of figuring out how to remove an x-box from it), would love to tweet! (A miracle in itself).

After reading and tweeting and passing out +Ks to people (to help with their Klout score, of course!), Hubby and I picked up Hubby’s Mom and Robert and spent the day going to lunch and the movies.

The day flowed perfectly. Robert’s bathroom breaks fit into the lunch and movie schedule better than if they had been planned. We were not late for lunch (we were meeting Hubby’s brother) and had plenty of time to visit before leaving to make it to the movie and get settled in before previews. We brought both the walker (to be used at lunch) and the transport chair (to be used at the movie) which helped tremendously. Robert didn’t mind being pushed around at the movie and he maintained his independence by walking with the assistance of the walker the rest of the day. Hubby’s back was bothering him (the change in weather doesn’t help his pain at all) but he didn’t let that get in the way of a good time. Hubby’s mom enjoyed a day spent with us that didn’t involve hospitals or doctors (she’s had more than her share this year).

After lunch and the movie, we picked up new reading glasses, other personal supplies and pens for Robert at a nearby drug store and went home to eat dinner. The day ended watching a come-from-behind victory from my favorite football team, the Nebraska Cornhuskers. Hubby, Robert and I whooped and hollered as they exploded in the 2nd half of the game, clearly leaving Ohio State to ask, “what the heck just happened?” Woohoo! Go Big Red!

It was a pretty awesome day full of little miracles. Although, not getting peed on counts as a pretty big miracle if you ask me.

I hope your day is full of miracles both big and small!

Thursday, October 6, 2011

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 “condition” is that we have to reconvert the space back to a garage if Robert ever moves out or we sell the house.

The approval came last week but I was hesitant to announce it because this condition really set me back. I mean, it really set me back. I was back to Square One asking myself if we really, really want to convert our garage and move Robert in with us. Do we really want to go to all of this trouble only to have to tear everything down when Robert is no longer capable of living with us or if we ever want to sell the house? How do we know when either of those things will happen? What if it’s 6 months or a year or two? Can we justify this work and expense?

Why do I keep going back to Square One every time a roadblock comes up? Usually Hubby is the one convincing me that we don’t need to be back at Square One rethinking our decision but this time, Hubby was right there with me! Yikes! We’re both rethinking our decision? One of us needs to get it together and I vote for Hubby. I need a minute to regroup.

Square One is actually an awful place to be. I feel stuck when I’m there. I feel like there’s no progress being made. I feel like the end of the project will never come! Heck, I feel as if the beginning of the project will never come! I feel like I am repeating myself over and over, thinking about the same stuff I’ve already thought about for weeks, months. It’s a miserable, dark place where I just turn around in circles. I don’t like going in circles. I get motion sickness and I wear out my shoes. Come on, I want to move forward!

It is obvious moving Robert in with us would be the best thing for Robert. I even think it’s fairly obvious that moving Robert in with us would be better for me because his care would be under my control and it would be centralized (I wouldn’t be driving all over the place visiting him, bringing him to our house for a visit, then driving him back to New Home). What a relief moving Robert in would be – I won’t have to beg New Home for television, I won’t have to worry about Nurse Ratchet changing his meds because it might be more convenient for her and I won’t have to worry about Robert getting good care because I’m fairly certain Hubby and I can do 100 times better than New Home.

I debated about disclosing these latest doubts until I realized how many other people must go through this when deciding on care for a disabled family member or elderly parent. How many of us are 100% positive we are making the right decision about anything (whether it’s moving them in with us or finding a suitable care facility or letting them live independently)? How many times do we rethink our decisions when obstacles pop up and things don’t go as planned? Sometimes we just have to take a leap of faith and for this risk-adverse, cover-all-my-bases, plan-for-every-scenario person that’s hard to do.

Am I positive this will work out? No, I am not. Not at all. For all I know, Robert will decline in a short period of time and I will have to find another care facility for him and we will be left with a bathroom, a wall and flooring that we have to remove (so we can again not use our garage to park our cars). The City’s aversion to garage conversions is based on not wanting people to park in the street which still doesn’t make sense since we have a driveway to park in!! I suppose when that happens, we’ll be selling some interesting items online. How much do used sinks and toilets go for on Craig’s List, anyway?

Saturday, October 1, 2011

Epilepsy: How Does it Compare

It’s difficult for me to grasp exactly what percentages and numbers mean until I compare them to something else (I didn't get the math gene in my family). I need a reference point and went searching for this so I could understand the “numbers” of epilepsy better.

More than two million Americans have epilepsy (some estimates put the number closer to three million). This seems to me to be a lot of people! Digging further, I find out 1% of the entire population has epilepsy which makes it seem rare to me. So which is it and why is it important to know?

First, it’s important to know so federal research dollars can be allocated appropriately. I’m not even sure if there is an established “appropriate” way federal research dollars are divvied up but I’m pretty sure as far as private donations are concerned, it’s a matter of the squeaky wheel getting the most money. It also helps to have a big name celebrity attached to a charity or a common condition affecting more people or a telethon or even a disease that is well known or more “relatable.”

Many people don’t even know what epilepsy is (so it’s not well known) and others are afraid of seizures and the person having them (not so relatable) so research dollars are scarce.

For me, education about epilepsy is becoming more and more important. I want to learn more about it and I want others to learn about it too. If education brings in more research money then that would be an added bonus. Since I’m not a celebrity we’ll have to go about educating and raising funds the old-fashioned way: through blogging and tweeting.

Okay, so that’s not really old-fashioned but I don’t know Morse Code and you certainly don’t want me doing a singing telegram (count yourself lucky if you’ve never heard me sing).

Let’s understand the numbers. Government resources or foundations for each of these diseases estimate the number of people in the United States living with these conditions:

HIV: 1.1 million
Parkinson’s Disease: 1.5 million
Epilepsy: 2 – 3 million
Alzheimer’s Disease: 5.4 million
Diabetes: 25.8 million

Could you have guessed that epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined? (Thanks to Cure Epilepsy for that fun fact).

The federal research dollars spent on Parkinson’s disease is five times what is spent on epilepsy. I find this astonishing but absolutely don’t want to take away research money from any other disease. What I’d like is for epilepsy to at least be as well funded and as well known as these other diseases so the stigma is removed, people understand what it is, people have it on their radar to make donations for research and we can get down to the business of curing epilepsy and fully controlling seizures.

You can help by joining the Epilepsy Foundation in their quest to get more federal research dollars. Please sign the petition here. You can also make a donation to the Epilepsy Foundation here.

National Epilepsy Awareness Month isn’t until November so I’m jumping the gun a little bit but, the way I see it, Epilepsy Awareness needs all the help it can get!