Dementia Research With Some Seth Rogen Humor

Dementia is complicated. Alzheimers is the most commonly known, which we usually see as getting old, misplacing keys, forgetting which day it is. But, there's so much more to know! In just a few short years your loved one can lose the ability to communicate. They can become a ghost of who they once were. They can forget who you even are. It's painful, it's difficult and our country isn't properly prepared to care for these people.

 "Early onset" has become a phrase that's quite common in  our household.. My father was only 55 when he was diagnosed five years ago. Today, five years ago my family told me what his diagnoses actually was. This disease, the one that we have no way of slowing, stopping, or reversing. There are excellent studies working at this very moment, especially at the hospital of the University of Pennsylvania, where we were regulars. But, what solutions have we reached? Why is there not more money in research, more knowledge about dementia readily available, or even just a little more support for those who are dealing with this first hand? 

My family lucked out, UPenn was just across the bridge. We also had an excellent support system of friends and family. But, even in our case we still struggled financially and emotionally. 

Recently, actor Seth Rogen spoke to members of congress about his own experience with Alzheimers. So much of what he says is honest with a few bits of humor thrown in. People need to speak up, things need to change.

A Halloween Prank

Halloween 2011 was quite an eventful weekend..
As Halloween fell on a Monday, most of the festivities were set to be the Saturday before. Because of this, I made a plan with a friend to dress up and go to a local bar. All in all, it was a very nice time, with possibly a little too much to drink& not nearly enough sleep.. Both awful choices for being a caregiver. I was off my game& boy was dad ready for this moment...

To set things up, I should also mention we hadn't realized but Friday evening my friends keys had gone missing. We assumed that she had misplaced them. Just to be careful I made sure I asked dad about the keys a few times, tried to bribe him with special  snacks, and a little bit of trickery to see if he would give up them up. No luck.

Well, Sunday morning rolled around and Dad got his perfect moment. Mom was headed to the store to pick up some things for a fun BBQ dinner and my friend and I were just trying to keep ourselves upright doing things around the house.. We failed horribly. Within ten minutes of Mom leaving we were both passed out on the couch, leaving Dad unattended.. with the keys to a car.

We were awoken a half an hour later to a state trooper banging on the door, Dad in cuffs, and some serious confusion. While napping he had taken off in my friend's car and headed to the corner store to get some snacks. With his insatiable appetite he was just walking around the store, opening snacks and just stuffing food in his face. At this point, he was barely communicative so the workers had no idea what to do. Just imagine a 6'4" man walking around opening food, not paying, and not answering any questions. Not to mention the blank stare he had. They had no choice but to call the cops. He was just as unresponsive to the officer and continued to eat whatever he could get his hands on. Eventually, with some work I'm sure, they got him to tell them his address and put him in the back of the cop car. He came home unshaken, wet from an accident, and ready to eat more. (I'm telling you, insatiable!)

It was a terrible moment for me, trying to explain to this VERY polite officer how my father was ill, I had obviously made a mistake, and I would really appreciate if he could just take pity on us. He was more then kind and understand. I quickly learned I didn't have to push the pity card because oh did he feel awful for us already. Twenty minutes with dad and he couldn't imagine what our life was like..
No charges were pressed, a kind bystander paid for what he had eaten, and all that was left was the clean up at home. I quickly had him clean, in new clothes, a new depends, and ready for his next meal before mom even got home.

It's shocking that, at that point, Dad was unable to do simple things such as mow the lawn like he used to, or help on the farm. BUT he was able to take keys, hide& lie about them, and wait for the perfect moment to sneak out and drive to the local store to eat. It's amazing how the mind works I suppose.. but we did learn a few lessons that day. Keys were guarded extra carefully, we were more diligent with watching Dad, and don't ever doubt his abilities when he really wants something.

A Beautiful Moment

I recently had a conversation with a friend about her life as a caregiver. She is 7 months in, taking care of her mother who is quickly declining from liver cancer. She was previously taking classes and working as a waitress. When her mother was diagnosed she was quick to put her life on hold. She has no regrets about this decision, but she is having difficulty accepting that there is nothing she can do to help her mother. She talked about how awful it is to watch someone you love slowly die.

I silently listened to every word she said, remembering saying almost the same thing just a few months ago. The last thing she said was about her fear of seeing her finally pass. At this I spoke up.. I told her that she is doing everything she can. Giving her time and love is the best you can do for someone so terminally ill. While it is terribly difficult, it builds strength. While it is not for everyone, it will be an experience that shapes you& stays with you always. I cannot say how her mother will pass, but if she is able to be with her when she  does, it is a moment that no one will ever be able to take from her.

Two and a half months later, I think I'm starting to be a little more at peace with what happened in my house. Mom and I were the last two touching dad while he was still alive. We cried and said nice words and sat in shock as the paramedics took him to the hospital. We shared a laugh about what an odd day it had been.. How dad was ready to go, how he had spent extra time with me that day just relaxing and watching TV (which was unheard of lately), how mom had gotten home a little early from work to spend almost an hour with him before he passed. I know that he is at peace& I think he was ready to end this part of his life.

Death is a terrifying, confusing, and extraordinary moment that is a part of life. Everyone's life.. and I won't forget my Dad's passing. Not as long as I live. 5/20/54-4/8/13 Miss you papa bear <3

Research

I've been getting better at talking about the caregiving a little more lately. Not always honestly, I do use the word "fine" quite a bit.. but better than before. 

One afternoon in January we had one of the girls doing research at UPenn come to talk to my mom and  I about our life. We spent hours chatting, telling stories, and sometimes holding back tears. In the end she fixed it up to these five minutes to be entered into a Neuro film festival. It's important to get this information out there. Prevention is possible for some, and a cure is out there for the rest of us. Spread the word!

Tricks of the Trade

I've got a quick little story& then a few tips on being a caregiver. Now my tips are from personal experience and obviously don't apply to everyone, but maybe they'll help : )

Part of this disease for dad has been an insatiable appetite. I firmly believe he'd eat us out of house and home if he were given the opportunity.. And that's saying something for us. We've always got a full kitchen and cabinets! Because of his eating we spent about two years chaining and locking up all the cabinets with food and the fridge. It was wildly inconvenient and not always full proof. Our newest fix is that he is not allowed in the kitchen at all. We have a pretty open set up in our house, but the "no kitchen" rule has worked pretty well. No more chains and we can actually leave some of our snacks on the counter now!
Since he can't go in the kitchen, we make up and serve every meal. Tonight was a big portion of spaghetti, and I left the pasta whole, the only way to eat pasta in my mind. Well after I placed his food in front of him I watched him for a few moments. To my surprise he grabbed his fork and a spoon and started to try to twirl his pasta around his fork.
I almost cried, which sounds ridiculous.. I know, but when I was little I remember him teaching me how to twirl pasta out a restaurant. He showed me over and over how to do it right so you didn't end up a mess. The point of this story? This is a man who has drank soup out of the bowl to get it down faster, has eaten steak with his hands because I hadn't cut it enough and it was easier. He has no care for etiquette or mess, and here he was twirling his pasta!

So first tip, have low expectations.. you won't be disappointed as much and little surprises will absolutely make your day. I honestly can say I try to lower my expectations day by day.. which is not a simple task. He has a two word vocabulary anymore, "yeah" and "good." So it was amazingly frustrating when i asked him how he slept over and over this morning and all he could say was "yeah." Obviously, my expectations were set too high.

Patience, tons and tons of patience. It's exhausting some times to be this patient. When you start to get upset and impatient though, how are you going to snap? Scream, throw something, say something impolite? The only person it affects is yourself. Dad is completely apathetic anymore so when I get really upset he just continues the blank stare. So my screaming only gets me more upset. I will note.. sometimes it does feel good to throw something, just make sure it's not breakable because you will be the one cleaning it up!

A little bit of humility never hurts. There are going to be times you have to do things that you never imagined. Caregiving pushes limits, but your loved one will need you, even if they are no longer able to appreciate you.

Time for yourself is one of the most important things to involve in every day. There may not be very much time to do this, so trying to turn normal every day things into "your time" can help. I like to think of cooking as my time, Dad watches from his seat and I sometimes turn on music. I'm usually cooking for him, but if I think of it as my own time I know I'll get some every day.

Constructive outlets for your emotions. Working out, gardening, and talking about life are all things that help, personally.

And of course, a nice bottle of your drink of choice. Once in a while it just helps you relax a little bit when you aren't on duty.. Lately, it's been a vodka club for this girl.

Diagnosis

In fall of 2008 the symptoms were building up. He barely spoke, rarely showed emotion and was getting into trouble at work. We had family friends telling us that something was off about him. We even had  some people who were first meeting him saying that he was just not right. Unfortunately, my family sucks at doctors, Dad especially. We don't go to the doctor unless there is a serious amount of blood or an obvious broken bone.. Doctor's don't really have answers and prescriptions have side effects that force you to take more pills.
Anyway, back on focus, it took a lot of pushing to really get into a doctor.. and mom was the worst. But who wants to find out that something is actually wrong with your spouse when he's only in his early 50's? So mom ate up all the weird things they were throwing at her.. depression was first, then kidney stones with side effects from medicine I believe? Crazy talk.. but still, we listened to them for a bit and dad swallowed their pills, joined a gym, and started speaking to a counselor. Nothing changed, and we started to notice things were worse than we even thought. I was a sophomore in college, swimming competitively and just starting to date a nice boy. So to say I had no idea what was going on at home is a huge understatement. But, once we knew something was definitely wrong and I was home for winter break I saw how much my father wasn't, and hadn't been there anymore.

After I was back at school, Mom made an appointment with a neurologist at UPenn, after MRI's and some testing (I missed all this part) a doctor came back and told mom.. FTD, you're life is going to change over the next 6 months and he only has 2 years to live. Any questions?
Dumbfounded, Mom didn't know where to start and didn't learn much that appointment. This was February 22 2009. Five months after starting the whole process of really trying to figure out what was going on.
I was right in the middle of some exams before spring break so nobody told me. I won't ever forget that phone call when my sister called to tell me he was sick, it wasn't a tumor or cancer but a form of dementia. I asked, like a child, is he going to get better? And she said no. That's all I wanted to know, I just wanted to hear I was going to get my dad back, but this disease does nothing but take from you.

From here we found a doctor at John's Hopkins mom really liked, he spent hours talking, teaching and answering any questions my family could think of. Leaving much more informed, we weren't much happier than after finding out he had FTD.

After the Hopkins appointment, Mom found a doctor at UPenn that our insurance would actually cover. We now have a doctor who conducts some pretty great research over the bridge that we've been a part of. In my opinion, the more we share the better.
With this research Dad gets MRI's once a year and was involved in a study that brought someone from UPenn over to do an assessment of what goes on in dad's brain about once a month. This went on for about two years. Last year they stopped the visits and told us that the info they were getting wasn't viable for their research anymore, and that his atrophy may have moved into other areas of the brain than just the frontal temporal lobe. We continue with the MRI's but his one this past December didn't go all that well. I usually sit in the little control room and talk to him when he gets twitchy, but this time I didn't. I just wasn't thinking enough to tell them this. but anyway, when he got uncomfortable and they asked do you want to stop he used one of two words he says anymore, "yeah." and all other questions were just "yeah" "yeah" "yeah," so they had no choice but to stop the MRI about forty minutes into it.

Welp this went past the diagnosis! but research is important too! Get involved, ask questions, and check out clinical trials if they are available.

But you went away, how dare you?

Well miss Miranda Lambert sings it so well, so here you go : )

She's phenomenal in general.. but this song gets to me a bit. I know it's about her husband, Blake's brother dying, and I know its about death... but something about it makes me think of Dad. 

Maybe I'm crazy, probably actually. But anyway, the song is beautiful.

SO the lyrics, "but you went away, how dare you, I miss you. They say I'll be okay, but I'm going to ever get over you."

He's my father, obviously I'll never get over losing him. But at the same time, I feel like it gets across the bit of anger I feel towards him. I know it isn't his fault, but there are still times I get angry with him for this disease. I get angry because this isn't the life we were supposed to be living& I get angry because all of these great years with this amazing man that I don't remember.. I was too little or busy being a selfish teenager. There are plenty of people who tell these great stories, but I can barely remember this man they speak of. 

A different take then what it was written for, but it brings up shame, guilt and a dash of anger.

But it is a great jam : )