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 : )

Everything Changes

Overtime, everything changes. With FTD the changes can come quickly or slowly, subtly or hit you right in the face. But, no matter, everything changes.. you're personality, you're habits, you're likes& dislikes, you're schedule, you're relationships, roles in life.. it all changes.
With Dad he barely has any personality, likes, or relationships. I suppose food and driving me crazy may still be his likes.

Roles

The roles he played? He used to work as a landscaper and grounds keeper at a local school. He can't do either of those things. My roles used to be student and daughter. I've graduated college and have not acted or been treated like a daughter in years. We all take on new roles to adjust to the new lives we live.
Dad used to be a provider, a decision maker, and a problem solver. As his disease began to take over his decisions were questionable, but mom remained unwavering. She trusted him, no matter what he put us through. When I was 15 we picked up and moved from the town that Dad grew up in, and we had been actively involved in for almost 20 years. He said he wanted to live on a farm& here we are.. the house we bought was a DISASTER to say the least.. 15 acres and a very cheap fixer upper, we spent a pretty penny making this place exactly what my parents wanted. By the end, Dad was no longer working and his new income made paying for the mortgage difficult. Most of the problems he'd fixed when we were building were not done well, therefore became even bigger problems as the years passed.. from leaking ac that caved the rough in to poorly done electric that burnt out plugs. It's been a The roles he used to fill have become vacant and we've tried to fill in as best as possible..

Relationships

This one covers a LOT of difficult subjects, but I'll try to keep it brief.
He certainly changed being the husband that he  used to be. One of the big signs I used to tell mom to acknowledge was his communication. I asked her to go a day without talking to him and see what he did. He didn't start one conversation with her. Now my dad was never an overly communicative man but he was still one to ask how are you, say good morning, talk about his day, and such.
With his friends, he was always someone that was widely known& loved.  He had a BIG gregarious personality that just pulled people in. You couldn't help but notice when Doug came into a room. All of his life was like this, but with the disease he started telling stories from when he was a teenager and bragging about high school years, which was not like him at all. People who didn't understand pulled away, people who knew him told us, "something is not right." And, boy were they right.

Likes& dislikes

Well this a big one too, but again.. briefly, he has lost interest in absolutely everything. Now a days the only thing to excite him is food, which is a pretty normal characteristic, we've been told. 

He keeps busy with coloring in his coloring book and trying to put his puzzle together, normal things for a toddler. He used to like socializing, animals and of course projects ( he was a bit OCD with his projects ) now he stays far away from all of those things..  Pushing away the dogs, shying away from the horses, laying in his room when people come to visit, and unable to do any of the things he used to. This is a man who has BUILT barns and put together whole brick patios beautifully!!
He does however still LOVE ice cream, I gave it to him last night and tried to get a picture of him enjoying it, but he just could not look away long enough..

Changes happen, you may not catch them all, but eventually you realize that nothing is the same.. With FTD, these changes are debilitating, and have completely taken the man I used to call Dad away from me.. 

Change sucks. 

Bubbles in Your Belly

This past fall, Mom went down to North Carolina to explore some farms with a good friend. She brought back all sorts of fun goodies. One of the great finds was a homemade goats milk soap made with lavender. It was shaped like a regular bar of soap, but was a dark brown and had pieces of lavender floating in it.
welll, one afternoon I was in the kitchen cooking and had music playing. I had Dad in my peripheral vision, but just didn't notice when he grabbed the bar of soap, unwrapped it from its plastic and took a big bite out of it! I stopped him as quickly as I could (one bite in) but he refused to spit it out! I couldn't believe it, he just gulped it all down. I forced him to drink three glasses of water and gave him very bland food the rest of the day to quell his belly but I'm sure it was not nice coming out! For whatever reason it worked well enough, so there wasn't really any repercussions for us.

Now for  the less fun part of the soap eating..

To start, I recently got into trying to do things myself. I've made my own laundry detergent, soap, fabric softner, and dog food... so far. It's rewarding, not too difficult, and definitely saves money. Lord knows we could use a few extra bucks every month!
Well, this soap I've gotten into, I make with honey and oatmeal. The base is goats milk and oh my goodness does it smell great! I've been putting it into a small dish as a mold and it turns out like this:

Well, with Dad's addiction to eating everything he can find, one morning it seems he snuck into the kitchen ( which is one place he is NOT allowed, but mom missed him while I was still asleep). There was a bar of my new soap in the dish by the sink.  By the time I woke up and started doing some things in the kitchen, this bar was long gone. Luckily, we had plenty of soap that we could still use. The bad news, his belly was not happy at all. Thankfully, we have him wear depends. Not thankfully, he& the bathroom were a mess. An hour later, a shower, a vinegar cleansing, and washing sheets/clothes/my eyes, the worst of it was over.

Soap will be hidden even more than before.

A Day in the Life..

A little snip of what we do every day around our house with dad..

He tends to sleep in lately, with his little concoction of medicines, I'm surprised he wakes up at all.
So, whenever he stumbles out, he's usually holding himself up with the walls because of his low blood pressure (we think) and getting up quickly because he smells food. He gets either 3 cups of oatmeal or a big bowl of cereal along with his little bowl of medicine.

At the moment he takes a big dose of Seroquel twice a day, 375 mg of depakote twice a day, an antidepressant called pristiq every morning and 100 mg of Trazadone each evening. And the brown things are a chocolate chip, I'm sure they're as useful as all the drugs.. 



Some days he goes back to bed for a while, others he paces around a lot and tries to sneak into the kitchen for more food. His appetite is insatiable, even though he continues to lose weight.. completely unexplainable. 

There are few things he's still able to do, but some days are better than others. We'll get him outside to help with the horses some days, just cleaning up manure and moving hay since he's afraid of all the horses now.. even his own big sweetie. He collects the mail usually, occasionally takes out trash, and colors in his coloring book if he can pay attention long enough. A lot of his time is just spent watching me in the kitchen. It's where I'm most comfortable, so I could spend hours cleaning, prepping, and cooking a few meals in there. With his obsession with food, some days he'll sit and watch me all day.

There isn't much else that interests him. It's sad to watch..
Everything I listed that he may do still comes with multiple commands and constant supervision. Just to get the mail we have to tell him to get a jacket on, ask him to put his shoes on, and remind him once more before he goes outside to walk down to get the mail.

Showering isn't a daily thing, but when we do get him in the shower we have to tell him each step. Even getting in the water is a challenge! He has to be told  to get in, get his body and hair wet, we pour soap into his hand and tell him to wash his hair/beard/chest, then give him more soap to wash the rest of his body. Might I mention this is something that is all done with the shower curtain mostly open and he is naked, which doesn't sound like a big deal.. BUT this is the man who wouldn't even kiss his wife in public because he just didn't believe in any type of public displays.  
All of his clothes are picked out and laid out for him. He has to be told to dress in the new clothes and sometimes even reminded of how to put clothes on.
After his usually activities during the day, he'll usually get a big dinner and possibly sit and watch tv a few minutes with mom and I, if he can pay attention long enough.. Which doesn't happen very often anymore.
It's awful, but he's like a child, constantly being reminded of what he can and can't do, and only listening to a quarter of what we say. He gets praise when he does something well and high fives to pull his attention back to me when he's lost staring (at food usually).. I try to think of him as a three year old. Just as opposed to learning, loving and being open to new things, he just continues to regress.

 One good thing, is he plays like a 3 year old. We even got him some extra large legos that keep him entertained a few minutes. He has a big 16 piece puzzle for 5 and unders and a few coloring books to work in. Right now it's Marvel heroes, which I love : )

A little piece of honesty, shocking isn't it?

I noticed the other night that it was helpful to actually write a few things down that I can't say out loud easily. It's difficult to admit to what I used to have when I'm busy caring for his ghost. My dad is completely gone, which is crippling when I allow myself to stop and think about it in that manner. That's why I try to think of him as a person in need, instead of the amazing man he used to me. There is a big chunk of time that I honestly can't remember right now.. I barely even have any memories of the father everyone tells me I used to have. But, it's more of a mental block to make it a bit easier to cope. I think..

I wrote honestly to my roommate my freshman year. Having lived together for an entire year we got really close. She ended up taking a trip to Costa Rica to spread the word of God and teach english. She's awesome.. but she asked how my life was, and how dad was.. this was my wildly honest response..

My dad's disease is terminal, it's a form of dementia. And, yes geology was my goal but I was needed at home so I changed to enviro science so that I wouldn't need an internship, grad school, and an extra semester. It's not too bad though.. I don't have a clue what I want to do in the future though, except survive really. It's tough every day here, dad's alive, but he's not here anymore. His eyes are empty. His personality is completely gone. My mom's great though, crazy.. but who wouldn't be. We work well as a team around the farm and I do majority of the care of my dad.. I'm a control freak and really don't trust anyone with him... It all sounds terribe, I know, but I'm positive that in the future, when he passes I will be able to look back and KNOW i did everything I could to help the best dad I could ask for and the most amazing mother in the world. 


I went on to change the subject to as many positive things as possible.. lol because that's what I do. Make jokes& distract with other happier things that aren't about what goes on with Dad. 
I think that little bit of honesty I sent her was the best quick description of what goes on here right now, so I figured I'd share. It's not often I actually tell people what goes on.