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?

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!

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?

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!