June 10, 2012 § Leave a comment
Recently I’ve seen a lot of the “prayers and hugs,” “God’s plan,” and other religious type comments in articles and in comments on FTD support group pages. I don’t mean to sound contrite when I say that all the talk of God and his plan for my family with my father’s FTD diagnosis just makes me think, “What a load of bullshit.”
Maybe it’s that I studied philosophy in college and one of my classes was at the most basic level based on the premise that humans are driven by three things: food, sex, and death. And religion is how humans cope with the fear of death.
Maybe it’s that I’m still very bitter that God gave my Grams cancer and when she beat it the first time it came back 13 years later. I still question “WTF did she ever do to God or anyone in the world to deserve that?” At the same time given my science background, I completely understand the reemergence of her cancer wasn’t God smiting her.
Maybe it’s that I’m pissed off that the Holy Father has forever screwed up Father’s Day for me, not to mention that my childhood dream of having my father give me away at my wedding is about as likely as hitting the PowerBall Mega Millions jackpot.
I’ll always self identify as an Irish Catholic. How could I not after the years of Catechism school not to mention all those family holidays were we stayed at Grandma & Grandpa’s (on my mom’s side). Grandma would nag all of us to get the hell out of bed to get ready for church. Looking back, her prodding is probably the only reason we didn’t look like slobs, though seems with her always full house it was amazing someone didn’t get up and lock her out of the house until noon. If there was an award for Irish Nagging Grandma of the Year….she would have been the Meryl Streep of that award. In true Irish fashion later on Sunday we’d all tease her about hauling our butts out of bed too early for human civilization, and forgive her for not forcing us to go to the first mass of the day. It was annoying at the time, but today its one of the things that made her my Grandmother. Just as Grandpa cranking on KMAQ radio in the kitchen when we were all trying to sleep in the living room…….perhaps they were in cahoots and no one else was coherent enough to think about it. But I’m getting away from the original point I wanted to make.
God and his plan might give you solace if you happen to find yourself coping with an FTD diagnosis……but that doesn’t mean it works for others. I don’t find it offensive if someone says something about God helping me through it or religion. But I do make a mental note to avoid the conversation again with them if I can help it.
I am generally not a negative person so hopefully this blog doesn’t paint me that way. I believe that for the most part, I have come to terms with living 2,000 miles away from my family while we’re all trying to cope with the challenges this disease has brought us. But I didn’t get to acceptance of what is through faith.
May 19, 2012 § 1 Comment
I’ve had difficulty writing here – for a number of reasons. I’m focused on getting out of the freelancing/unemployment world. But even bigger than that, I’m not really sure what to write. In a way watching FTD take away my father is similar to both of my grandparents’ battle with cancer.
It seems like there is more and more coverage in the press about FTD. Its not nearly as much of a household name as Alzheimer’s but it seems like major news outlets are covering the research a little more. And of course there are the articles about the spouses and children that are coping with the disease.
The NY Times recent article here is a pretty good read. FTD may be taking away my father, but I am gaining a great deal of respect for my mother for keeping her promise to stick with my father in sickness and in health. I hope that if I’m ever faced with the adversity she is facing that I rise to the challenge as well as her.
March 21, 2012 § Leave a comment
So after everything that I posted yesterday, it was as if just simply putting all the negative into words was signaling to the world, hey this lady needs a break.
The thing about being half a continent away from the person who actually has FTD, my good and bad days have totally different reference points than those of my mother who is dealing with the everyday issues FTD has brought to our family. My bad day is more from the emotional standpoint, not how many times my dad’s behavior has made me frustrated or any of the actual caregiving issues. I don’t want to say that my bad day is any more sucktastic than my mom’s bad days….they’re just different.
My good days are ones where I don’t feel like some emo hipster all lost any lonely in the world, or something great happens outside of what’s going on with my father’s health. It seems a good day for my brother & sister-in-law might be measured in what kind of non-edible objects their insanely awesome/weirdly adorable dogs tried to eat or destroy that day. Anyway, after making a few updates to this site, I realized I don’t really blog about the good days and by and large most of my days aren’t bad.
Earlier this week it was just one thing after the other piling on that wasn’t working out. After releasing all the thoughts from the last couple of days into that post yesterday – a good friend reached out with some great job leads and he knows the hiring manager as well.
The one thing that I learned a long time ago in the campaign world was to just roll with the punches. The way this disease affects my family – that is more true now than ever.
March 20, 2012 § Leave a comment
It seems that sometimes pieces of my father’s illness take some time for my brain to fully digest. When reality finally sinks in, my “always find the silver lining” outlook fails to find the positive. The past couple of days has been one such funk that I can’t seem to shake off.
From the February 29th through March 13th, I was back in the Midwest. The trip had a dual purpose – the first week I was spending with family and catching up on lost time together. The second week, I was in Chicago planning a national conference for 500 college students and young professionals as the Meetings & Convention Director for Young Democrats of America. I was excited for both parts of the trip – I was going to see my real family and my “YDA family” all over the course of two weeks!
The last time I was home in February of 2010 – just a few months after the diagnosis – I had a hard time sitting in the boring tiny airport waiting from my flight back west. I felt like I was fighting back tears that were welling up from my toes. For this trip I specifically planned to visit family first and then head north to Chicago to set up and run the conference. Until now, I’ve never admitted to anyone that the reason I did it in that order was because I was very afraid of dealing with having to leave my family to go back to the west coast for not much more than a freelance project here and there. This time, I was leaving with a purpose and a huge project to complete.
Typically the conferences keep me so busy that I rarely find time to properly sit down to eat anything let alone time to feel guilty about leaving my family behind. Then for roughly a week after these conferences, everyone ends up with what we all jokingly call “YDA withdrawal” while we adjust back to reality of wherever we live – or as we get over whatever virus we all picked up from the airplane’s recycled air on the flight back home. This conference was no exception – it wasn’t until after I’d gotten over whatever crud I picked up from my flight that I really started to think about non-political things.
Everything that I’ve read in the research gives an average of 7 to 10 years from the diagnosis. We’ve known about my father for 2 years, 4 months, and 2 weeks. Sometimes, it is very difficult for me to not hear a clock ticking away the time remaining. When I was in Illinois, I was very much able to live in the moment and ignore the clock. I am starting to think I hear the clock most when I feel particularly guilty for not being in the Midwest.
Shortly after I returning from my trip in 2010, I lost my non-profit job due to a restructuring. I rebounded quickly into the campaign world. But that only lasted until the Primary election where my guy got nearly 80% of the vote and the one opponent that was potentially trouble did not make it through so the campaign decided to save money by laying me off in August. Ever since then, I’ve been making things work in between unemployment checks and a handful of freelance projects – some small and some large scale events.
I suppose, I provided all of this back story as a way to avoid the subject a bit. But, its now or never.
What the hell am I doing?! I feel like I’m getting no where and just drifting through life on the west coast while my father’s clock is ticking down to zero. Its like I’m squandering my chances to spend what little time I have left with my father. Maybe some of the family feel like I don’t care about what’s going on or that I shouldn’t be doing what I’m doing. Usually, I chalk that up to the fact that they were the ones that didn’t understand why I wanted to move half a continent away in the first place. Even now, I admit that I don’t exactly want to move back to the Midwest because that would set my career back while I rebuild all the relationships to get my foot in doors that are already open to me here on the west coast. But I am now seriously wondering if moving back would solve anything other than some of the extended family would stop asking my mother when I’m moving home to help her. Is my father (as well as my mother, brother and sister-in-law) proud of the things I have been able to achieve so far, even the freelancing work? What would my dad want me to do? In college, he’d always tell me get a job – and moving back to the Midwest is sort of the opposite of that.
Before I left my hometown for Chicago, I stopped my father’s day center to say goodbye and spend a little time with him. He jumped up when I walked in the door and showed me a few of the things at the center and was really excited for bingo that was going to happen in the afternoon before the bus came to take him back home. He was also excited when I asked if he wanted to play a few games of Wii bowling before I had to leave. He gave me a hard time after won both games (I’ve always sucked at bowling but always had fun trying). I cried as I drove away with the fear at the thought of that hour or so being the last time I see my father. In fact, I still cry at that thought and don’t know how to accept and move on from that thought. Can anyone accept it for that matter?
Usually, I can’t bear to be this much of an open book about thoughts like this post so I write it down in a journal on my night stand. Most of my friends don’t even know that I feel as if I have had a nuclear bomb drop. I either don’t want to have to explain about FTD, I don’t want their pity, or I don’t want to burden them with my problems. But this one goes to the heart of the whole reason I started this blog – coping with not only the illness but my geographic distance so I figured I’d put it out in the universe.
Even if just putting it into words helps get it off my chest – I’ll take that tiny silver lining for the day as a win.
March 2, 2012 § 1 Comment
This week, I’m back home in Illinois visiting my parents for the first time in 2 years. Before I left Seattle, I was excited to see my mother and somewhat terrified of how I would handle the changes in my father. The conversations with my mom provided some insight into how my dad’s disease has progressed, and I’ve done the research. I think I was expecting some kind of Skeletor version of the father I grew up with, that he would be a vegetable that needed full time nursing home care. Maybe these expectations were a manifestation of the guilt I often feel for choosing to live so far away, or maybe it was just the fact that I am a planner by nature and I look at the end result and work my way backwards from the end goal.
Thankfully, my father isn’t He-Man’s nemesis. There are parts of his personality that are very much still there. His sense of humor and laugh are still there but there are definitely changes in him. In more ways than one, his behaviors feels similar to that of the kids at the preschool I worked at during graduate school. “No, I don’t wanna!” with the perfect inflection of a frustrated or stubborn toddler has been heard so far both nights as my mom helps my father go to bed. It is difficult to hear, but at the same time I find myself laughing so hard I almost have tears in my eyes.
There is one thing that I didn’t realize until I was here. I heard mom trying to corral dad on nearly every phone call between us, but it never really sank in how much she has to deal with until it was right in front of me. Because of her husband’s illness she’s giving up more than I think any of the extended family realizes. I don’t know that very many people in my generation would have that same dedication in sickness and in health. She continues to roll with the punches. This wasn’t a life she signed up for, but her commitment to my father through thick and thin makes me proud to be her daughter. It makes me remember a scene from an episode of Studio 60 where a journalist doing a story on the cast & the SNL type show asks one of the main characters, “How are you different from your mother?” The character replies, “I hope, in as few ways as possible.”
February 10, 2012 § 1 Comment
With the New Year, everyone is taking stock of their life – taking notes they learned in 2011 and trying to make things better in 2012. For me that task has recently brought a reminder that I need to live my life rather than just keeping myself in a holding pattern.
A year ago, I was in a job that wasn’t right for me. I was hired for all the wrong reasons – and I knew it from the start – but I took the job anyway. I had just finished a campaign and needed a job. As luck would have it the funding for the job dried up at the end of January so I was laid off February 1st. I wasn’t upset, in fact, I was relieved. I spent the next 12 months really taking a look at my options and examining what I wanted the next move to be for me.
To be honest, I still don’t have all the answers and I very much feel like I’m at that fork in the road. I’ve learned some of the things I don’t want to do as a career. But I also realized that I’ve used father’s disease to cross off some of the possibilities that are open to me. If I cross something off the list, it should be for reasons that don’t relate to my father’s FTD.
December 16, 2011 § 2 Comments
For pretty much my entire adult life both of my parents have been difficult to shop for around the holidays. My parents could afford to buy the things they wanted. Generally, this meant that if you had a plan to purchase something as a gift for one of them, you had to tell the other to keep the gift receipiant from buying it.
Finally, I stopped buying them specific items – it was just much easier for all involved to purchase a gift certificate. Now, my family is Irish through and through so of course we couldn’t just let someone open up a gift card holder. Well, more accurately, after a few years of duct tape, we never made it through a Christmas morning without some sort of tool. As a kid, it made wrapping presents a blast! We got to use rolls and rolls of old ugly wrapping paper and boxes within boxes. And if Dad got Mom jewelry, we definitely broke out the duct tape. One year, my uncle topped everyone – he put a gift card between two pieces of 2×4 wood and used a power drill to screw them together in 7 places.
Now that I live on the west coast, I generally let Amazon or USPS do the packaging (though I did impulse buy holiday themed duct tape.)
In a way, I’m reminising about the gift unwrapping to detract from the fact that I have no idea what to get anyone for Christmas this year. But also these memories are a bit bittersweet this year. FTD has taken away the practical jokes. Dad was generally the ring leader – and sometimes Mom would take it out on wrapping his Valentine’s Day present. If I remember correctly, one year it involved super glue and a bit of comedic relief for everyone except Dad of course.
For now, I have a few days to figure out what to get everyone. My father is likely to be the most difficult because I used to just simply get him a gift card to Bass Pro so he could buy all these gadgets and gizmos to help him catch fish. But now that he’s not really able to go fishing – I am at a loss for what to get him. Mom of course replies to my inquiries with “we don’t want anything.”
Since the thing I most want to give my father is a cure – I think I may donate AFTD so that other families won’t have to look back on their past holidays and wish for what might have been this holiday season.
December 13, 2011 § Leave a comment
Pharmaceuticals seems to routinely come up in the conversations about FTD, whether it is in general or specifically related to my father. It is also one of the biggest problems I have discussing. I’m a strong proponent of Western medicine. MAOIs NSAIDs, broad spectrum antibiotics, narcotic pain meds, and all the other drugs that my college roommate studied in pharmacy school – they’re all fantastic for their own purpose. But people need to know – FTD isn’t a disease you can just throw a pill at and it will go away.
I’d love nothing more than to befriend Alice in the room before she enters Wonderland. Where sitting next to the potion and cake that change her size, there is a magic cure pill. Sadly, this is not reality but it seems a number of people don’t understand.
Awhile back, one of the administrators at the adult day center my father attends while my mother is at work flat out told my mother to have the neurologist put my father on another med to help with his eating fixation. I understand that my father’s near obscession with drinking enough Diet Coke to flood the town and eating everything in sight can lead to a number of issues and situations that tax the patience of anyone. But if it didn’t require an expensive ticket and all day air travel – I would have gone into this woman’s office, to stand on her desk and yell at her. “This isn’t a disease, you can clear up with a trip to Walgreens.” What angered me most about this woman was that she was an administrator of a care facility that had a number of Alzheimer’s patients.
Thankfully, my father’s neurologist agreed with my family. We only have so much time left with my father – and we would rather it be shorter in quantity rather than affecting the quality by having him in a drug induced haze. The neurologist spoke with the daycare facility administrator and now everyone is on the same page.
September 25, 2011 § Leave a comment
You don’t want to know……or I just don’t know if I want to tell you.
Life in general is stressful and hectic for me. I hate that I’m currently having difficulty finding the silver lining, or making lemonade – whichever cliche you’d prefer to use. Don’t get me wrong, the flexibility freelancing provides from setting my own schedule to who I actually work for has been fantastic. But regularly fretting over my budget to make sure I can cover rent is just a stress I wish I didn’t have to experience anymore. Lately, so much has been on my mind that its difficult to know the things I’ve processed and the things I haven’t. Tonight, I hope to at least process some of what is making my brain a little too crowded.
Awhile back I came across an article in The New Yorker titled “The Aquarium” by Aleksandar Hemon. It is a gripping (and sadly only in abstract on their website) account of parents losing their infant daughter to an aggressive brain tumor. I do not compare his grief to mine, I could not imagine the loss of my own child (I don’t have any, but still cannot fathom the depth of his greif.) And although I find myself in the inverse of his account there was so much I found relatable.
Much like Hemon, I have a hard time talking to well-wishers. He writes:
We [He and his wife] instinctively protected our friends from the knowledge we possessed; we let them think that words had failed, because we knew that they didn’t want to learn the vocabularly we used daily. We were sure that they didn’t want to know what we knew; we didn’t want to know it, either.
When people ask me “What’s new?”, regardless of the truth, I reply “not much” or “I’m hanging in there.” I’ve watched too many friends listening to what is actually new to know I don’t want to see the look of pity or the look of escaping to their own realities that don’t have a sick parent. I don’t mean to say my friends are idiots – in fact many are rather intelligent, they just have a different reality with healthy parents. My friends don’t talk about A1c level tests, brain scans, whether the anti-depressant is working as an appetite suppressant like the doctors hope, whether it is really worth the argument to use the CPAP machine.
The former pre-med student in me can absolutely handle the medical conversations. It is a language I can comprehend and then process that FTD is a medical condition that just happens to be affecting my father. It is a scientific puzzle I can talk about with my scientific friends. Only problem is, I left that pre-med student behind long ago when I picked up the political campaign hackery and now most of my friends can talk hours about poll numbers and numbers of GOTV contacts but glaze over at the first glance of biological science. So I started to build a wall. A few scientific friends get to be on the inside…..the rest are protected from all of the science mumbo-jumbo.
One giant problem with the protection of my friends…. I feel alone in the fight to find some sanity in this. My friends no matter how amazing, are not mind readers so they may not understand why something so seemingly small would upset me.
For example, this past Wednesday was my birthday. I’ve had some birthdays in the past where I only ended up with very disappointed hopes….so in an effort to not expect too much, I decided that since I had to be at a meeting for my local Dems that night anyway, that I wasn’t going to do much. A few friends mentioned that it was surprising that I wasn’t doing anything. So I decided to just co-opt the “meeting after the meeting” at this great wine bar. None of my long time close friends stopped by to celebrate. While I didn’t want to make a big deal of my birthday, I found out that no one else wanted to make it a big deal either. No partner in crime that said, screw that – you’re important to me and we should celebrate. This whole crappy mindset was compounded when at the football game watch for my alma mater the trombone player played Happy Birthday to 2 separate people surrounded by throngs of friends and I was sitting solo at the bar.
I could have avoided the whole ordeal – had I simply said directly to friends that I wanted them to be there. But it would still be nice to know that if I’m trying to brush off or down play something that I have a friend who can read through my protectionism to show that I’m not alone and they’ll be there for me.
June 6, 2011 § Leave a comment
Being so far away from my parents is somewhat of a double edged sword.
I am able to be entirely independent from them and have the start of a successful career here in Seattle. Some of the big wigs in the area know who I am because of my hard work. However, because of the distance as well as the time difference, I’m sometimes able to completely avoid the effects of my father’s FTD diagnosis. But at the same time, whether its Catholic guilt, or just the desire to be a good daughter kind of guilt, I often feel terrible that there isn’t much I can do to help my mother and the rest of my family.
I’ve also avoided going home for over a year. I’ve had legitimate reasons for not being able to go – largely that the plane tickets home are too expensive for my budget. Also because of the work I do for political campaigns and nonprofits, my schedule doesn’t exactly allow for much down time. In fact, part of why it has been so long since my last post was because of a large fundraising gala that I was chairing. But I also worry that if I go home to visit that by staying at my parent’s house I will upset the daily routine and that won’t be helpful to anyone. Then again, maybe it would disrupt my father’s new habit of taking off to McDonald’s to steal fountain soda.
Deep down, I’m terrified of going home to visit. I don’t know how to reconcile the image of the father I grew up with and the reality that I see glimpses of when I talk to my mother or brother on the phone or when I read the email updates my mother shares with the family. They have been with him the past 18 months and have seen the small changes in him, whereas I last saw him in February of last year. And even the time from November of 2009 and February of 2010, there was such a marked change in his behavior and attitudes that it was somewhat difficult to cope with.
Another aspect of my avoidance is the lasting image in my head.
When I think about the family members that I’ve lost, I often think about the last time I saw them. I remember my grandfather in the hospital, so doped up on pain meds because the cancer had spread to his bones and he broke his femur by just simply standing up. My second thoughts are of the tall and slender man who looked better to me in bib overalls than he did in dress slacks and of the man who could make my brother & I laugh in the same stroke as driving his wife mad as a hatter. (But hey what’s a ceiling fan for if not to throw your balled up socks into to see how far they fly across the room.) I was a junior in high school when my grandfather passed away and at the time, I found it a little easier to cope with his passing because I had seen him in so much pain. In some ways it gave me comfort to know that my grandfather was in a better place.
I also lost my grandmother (I called her Grams) to cancer. But that was in some ways very different from losing my grandfather. During one summer of college I lived with Grams to work the system and establish residency to then get in-state tuition. Originally, I expected that summer to royally suck. To go from having my own rules and no one to check in with to living under the roof of my father’s mother. Crap, it will be like having to live with my parents and rules again, I thought. But even now, I still consider that summer to have been the best of my life. I discovered that while we had nearly 60 years between us, we really weren’t that different. I kept her up late at night asking about the family history and making her tell me stories of her courtship with my grandfather during WWII. She kept me up asking about things I’d always been around, from video games to things like reading the book The Diary of Anne Frank in school. She became one of my closest confidants. Right as I was preparing to move from Iowa to Seattle her cancer reemerged. She went to the doctors and had chemotherapy and radiation and the whole works. She finally lost the fight and joined my grandfather on what would have been his 92nd birthday in February 2007. I wasn’t able to be with her and the rest of the family in her final hours so I don’t have that image in my head of her suffering. Her funeral was really difficult for me, and I still really deeply miss her. But my first thoughts are always of the good times we shared and not of those last moments.
I share all of this info now because it definitely plays into my avoidance of the truth with my father. Now, I’ll be the first to admit that I’m not putting blinders on, but there are definitely things that I don’t want to see but I know they may soon become reality. I recognize that my father is not necessarily dying in the near future and the former pre-med student in me knows that FTD will not be the primary cause of his death. So the emotional side of me is hiding behind the scientific side of me. I am unsure of the best way to move forward to accept the person my father has become and deal with the affects of his diagnosis.