We’ve been having a rough go of things as of late with my mom’s Alzheimer’s. I’ve been trying to crowd-source information & resources on Twitter and have had so many people reach out with their love and prayers and good thoughts. It’s appreciated more than you know.
Someone this morning lamented that more needs to be said about this silent disease. And he’s right. But I know why *I* haven’t spoken too much of it sooner – and I’d hazard a guess it’s the same reason many have – shame.
First off, I am not ashamed of my mother or her diagnosis. I am ashamed of the things this disease makes her say & do. I’m ashamed of the amount of guilt, anger & fear this disease causes her – and that I am unable to really do anything but pacify her, which means lying to her on a regular basis. I’m ashamed of the way my feelings are hurt by the things that Alzheimer’s makes her say about people I love – even though I know they aren’t real. I’m ashamed that the amount of effort it’s taking to keep me and the rest of my family emotionally afloat leaves me unable to do other things I’d rather be doing – although I am making self care a priority as often as possible.
I’m ashamed that one my biggest fears for this disease was my mother forgetting not only my name, but that she bore me from her own body. I’m ashamed to realize I was woefully unprepared for the emotional toll this middle stage of Alzheimer’s can take.
I’m ashamed that what we’re going through isn’t what I had experienced with Alzheimer’s previously (which admittedly, isn’t much experience even with a strong family history). I’m ashamed that no matter what I do or how hard I work to calm my mother’s fears, another one will pop in place of the allayed one – often to circle back to it a short time later.
I’m ashamed that while we try hard to preserve my mom’s dignity, it can be difficult to do so. Mostly because when I ask for help, I need to disclose feelings or actions that to someone (thankfully) unfamiliar with the disease may seem completely unfathomable. I assure you, even a year ago I couldn’t fathom my mother like this.
But I am not ashamed to ask for help. From professionals. From my support group. From my peers and social media. I am not ashamed of the way my father, sister and I have united to do what we can. And even though there is much, much shame, I refuse to ever be too ashamed to talk about this. Whether it helps someone else going through this or unites me with a fellow caregiver – it will have been worth it. Writing is my outlet -even if no one reads it. I feel better for vomiting words on this page and getting them out of my brain – if only temporarily. xo
For those of you that aren’t aware, my mother was diagnosed with Early Onset Alzheimers (EOD) a little more than a year ago. Being the kind of person that I am, I immediately began researching and discovered, to my horror, that when you have a parent with EOD, there is a 50% chance of the child carrying the gene that causes it, and therefore a strong possibility of developing the disease.
Because Ryan & I were very much discussing starting a family at the time of her diagnosis, I felt I wanted to know if I carried the gene. And I said if I did, it may change my mind about having biological children. I made a call to the office seeing my mother and left a voicemail that I would like a call back from someone to discuss genetic testing.
I had many reasons for wanting to know if I carry the gene. First and foremost, I’ve already received a surprising, devastating diagnosis once already in my life. If I can know something is lurking around the corner, I’d rather know about it. With that said, if I *do* know, I can start annual screenings now which will allow for earlier intervention with medications if necessary. I also wanted to know if I carry the EOD gene because symptoms can begin at an age younger than I am now. Is it worth the risk to bring a child into the world only to leave it (and my husband) possibly before my time? Or to have my husband need to be both a father to our child and a caregiver to me? That’s a lot to ask or expect of someone, even your life partner. I would do it in a heartbeat, and I know Ryan would too. But that doesn’t mean it’s what I want if it can in some way be prevented.
In the weeks & months that followed I had this discussion with many people. And those people all had different opinions of what I should do and what they would do. I made sure my mom was ok with me having the test. The guilt she felt at my diabetes diagnosis was palpable. While we are definitely seeing the effects of the Alzheimers not just on her memory but also her mood, she is still my mom and I value her feelings. Ryan said he understood my reasoning and would support me however necessary. My best friend reminded me that knowing doesn’t change the outcome and even if I know that I WILL develop EOD, there’s no knowing WHEN. She also reminded me that I may not carry the gene but could get hit by a bus at any time so it’s a moot point. This is why she’s my best friend – she knows how to keep it real.
So it’s been sitting in the back of my brain for almost a year. Some days, like the ones where I attend a support group with Ryan and my dad, or the ones when I attend doctors appointments with my mom, I think of it more. I felt not calling back when no one returned my call was so completely out of character for me that it spoke of what my gut was telling me. But today, I got a call back.
It’s taken over a year and we don’t know how or where the disconnect happened but I spoke to someone at the genetic center in my local hospital today. We discussed my chronic illness and my mother’s diagnosis. We discussed me wanting to start a family. We discussed what insurance will cover, what they might look for and other tests we may look into running. And now? I didn’t make an appointment.
First off, I need to speak to my parents. In order to test me, they also have to test my mom. I suppose that seems rather obvious. But the reality? I’m fucking terrified. And I’ve been living terrified for quite some time. On top of being scared of EOD and freaking out anytime I do something that could be seen as a symptom (misplacing things, unable to find a word, forgetting something that seems important), I’m scared of becoming a mom!
Now in reality, that’s a post for another time, and we all know I probably won’t ever write it (right Zach?). But that fear isn’t a secret either. It’s something Ry & I discuss regularly – the fears we have over me getting and being pregnant; the fear of being responsible for another human being for its whole life; the fear of where will we find the money?!?! But those are all real, valid fears. And if we weren’t the slightest bit terrified at the thought of parenthood, I’d probably be even more concerned than I am.
So now I allow it to come to the forefront of my thinking. I need to decide if I’m more scared to know or more scared NOT to know. I don’t have that answer. I’m not even sure how I will arrive at it to be honest. As I said, I’ve discussed this with family, friends and even my therapist. But no one can make the decision for me although I know I have tremendous support no matter how this all shakes out. So the next few days, I’ll let it marinate. I’ll talk Ryan’s ear off incessantly with pros & cons. I’ll most likely lose some sleep too (I’m getting used to that these days – JUST TURN OFF BRAIN! SLEEP IS GOOOOOD!). Until then, I would like to hear what *you*would do in my position. And definitely why. Like I said, my decision, but as the Beatles sang, “I get by with a little help from my friends.” xo
Where in the hell did this year go?! Time really does fly and I swear that it speeds up with every trip we take around the sun, science schmience. 😉
I like to wrap up every year thinking of what made the year great or what didn’t make it great and how I grew. I also like to look ahead to the new year and what I anticipate it will bring. I’m not a resolution maker per se but I definitely have goals for my life in the coming years.
Today let’s talk about what happened in 2015.
Ryan & I went on a wonderful honeymoon to San Francisco in January. We saw the Golden Gate Bridge, rode a cable car, walked up Lombard Street, visited Fisherman’s Wharf and visited NINE breweries in the area (Rogue, Anchor, 21st Amendment, Thirsty Bear, Lagunitas, Half Moon Bay, Cellarmaker and two I can’t remember which maybe aren’t in business anymore?). It was awesome! It was the first real vacation I’ve taken as an adult and the first time Ryan & I had traveled together. We talk about going back for our 5th or 10th anniversary. And NOT staying 45 minutes outside the city (which with traffic means 2 hours – no matter the time of day. Traffic was my ONLY complaint about this trip)
I became a Jamberry consultant in March. I’ve learned a lot about running your own business this year. I still don’t know if I’m cut out for it but looking forward to continuing to try in 2016.
We moved in July to a bigger, nicer place. It was a nightmare of a move for many reasons but we love our new home now. It’s (hopefully) only temporary (more on that in my Welcome 2016 post!) but is everything we were looking for – bigger kitchen, more storage, washer & dryer – in other words, everything we were looking for in a home to be able to start *really* discussing having a baby.
We also got a new bunny! Noodle joined our family shortly after we moved. He’s a sweet, fluffy boy who is super mischievous. He & Grier still can’t be out of their cages together but I did catch them bathing each other through their cages the other night.
My mother’s Early Onset Alzehimers diagnosis was confirmed. The diagnosis itself isn’t tough. It was an answer we’ve been fighting for for a long time. We have a long battle ahead of us but I’m grateful for online communities of support and the support of family members who’ve already fought this battle. I am still trying to decide to get the genetic testing to see if I carry the gene. As a chronic illness patient I am tempted. I don’t want to be “surprised” by a diagnosis again. On the other hand, besides early interventions (that will end with the same result ultimately), what is there to gain from the knowledge? See, an inner struggle. I am FABULOUS as self conflict – go ME!
After 9 months of being VERY sick(lack of appetite, nausea and lots of other fun gastro symptoms NOT including weight loss), I went gluten free in October. I had seen 6+ medical professionals (including but not limited to: PCP, therapist, naturopath, endocrinologist, CDE/Nutritionist and gastroenterolgist) endured endless rounds of tests (one involving eating radioactive eggs and waiting around the hospital for 4 hours) and countless med changes I decided to take the sage wisdom of my good friend to heart. What could a 3 week elimination diet hurt? Nothing. And within DAYS I was finding relief. I’ve remained gluten free since and I have no intention of turning back. It’s a HUGE change but there are so many options fog gluten free living if you know where to look (hint, the gluten free aisle at any grocery store!). I know I don’t have Celiac (even though being T1 increases my chances of developing it as they are both auto immune disorders) as I’ve had a gluten tolerance test within the past year. I have no interest in testing now since that means going back to gluten for three weeks (makes me sick just to think about it) but I am fairly certain I have NCGS. All I know is gluten makes ME feel like shit. But I’m not gonna walk around expecting everyone to transition to gluten free. You do you people. BUT – if you’re suffering from undiagnosed gastro ailments as well as headaches, fatigue and acne, just try to eliminate & see what happens.
I’ve maintained an A1c of under 6.5 all year. I am INCREDIBLY proud of that. With being so sick for so long, my diabetes care suffered. But it shows my good habits have actually become habits and even when I don’t want to, I am somewhat taking care of myself. Yay!
I think that’s a decent wrap up. What was the highlight of YOUR 2015? xoxo
It occurred to me today than I am deep in the trenches of diabetes burnout. I’ve been feeling it creeping in over the last few months. I don’t know if it’s the 2 years I’ve been working SO hard on my A1c that did it? Maybe the slight A1c increase at my last endo appointment – the first in almost three years? Maybe it’s that I’ve been sick and my eating & exercise patterns and habits have been off for 6+ months. Maybe it’s because I’ve been having trouble finding patterns so that I can make corrections to avoid these lingering lows and crazy highs that require many SWAG and rage boluses.
Maybe it’s because I’ve been thinking a lot about how naive I was when I was diagnosed. How I thought diabetes was something that would be difficult at first but I’d learn to manage it effectively and lead a normal, albeit much more medically expensive, life. I’m struggling to come to terms with the fact that is not true.
In the early days of my diagnosis, I was also going through a divorce. In light of the emotional fallout I was experiencing, I didn’t really consider the weight of what was happening to my body. Yes, I learned as much as I could as fast as I could, but for some reason I still thought that the longer I had diabetes, the easier it would get.
I suppose in many ways, it has. I use a pump and a CGM now as opposed to 10+ daily fingersticks and 7 or more daily injections. I know how to maneuver through the medical system to get what I need in a timely manner. I’ve developed a network of in real life AND online friends who share my burdens, my struggles and my joys in my life diabetes in a way which few can understand.
But I’m struggling to come to grips with the fact that diabetes isn’t a war I can win*. I will never be victorious when it comes to this disease. I will serve as my own pancreas for the rest of my life without a single break or vacation. I will live in fear of a nighttime low which I don’t wake up from. I will forever be scared of the complications that may be in store for me down the road – even with good management.
I am learning though that diabetes can be a compromise. And it doesn’t sting so bad when you think of it that way. I think of diabetes as my enemy, but it’s a PART of me and we need to work together to stay healthy – even if that diabetes pipsqueak rarely lifts a finger to help with THAT!
But for now, I will sit in my admission: I’m experiencing diabetes burnout. Maybe it’s time to FINALLY pick up that book from Ginger (how lucky I am to call her an IRL friend – who is also serving as my mentor as I transition to gluten free living). I wasn’t ready to read when she gave it to me. I think I’m ready now. Until then, I know I’ve done the hard part. I’ll pick my head up, keep moving forward – and set some alarms on my phone to make me do more than 2 fingersticks a day!!
* I am not positive I’ll see a cure in my lifetime. In all honesty, I don’t even think I’m hopeful for it. But I am grateful for the technological advances that keep being released that continue to change and improve my diabetes management.
My family visited Nova Scotia this summer and decided to send some of my brother’s ashes into the Atlantic. I wish I could have been there but my dad took a video so i could feel like I was there.
I’ve been watching this video over and over and over. And crying. Tears of happiness, appreciation, awe and profound grief & sadness. I wanted to share it with you all.
I was supposed to be a boy. I know this because when I was younger I found some audio cassettes marked “Baby John’s Heartbeat.” I mean, it was 1980. It was before the ultrasound technology today so there are no pictures of me in utero (thank God, I was an ugly baby!) but there exists a sound recording of my whooshing heartbeat at about 30 weeks gestation. I thought it was one of the coolest things I’d ever heard. But I was so confused as to why it was labeled “John” when I clearly was a “Jessica.” My mom informed me they had been told throughout the pregnancy that I was a boy (again, ancient technology – or lack thereof) and they had planned to name me after my father’s older brother who succumbed to cancer at 19.
I’d say it was about that time, at 6 or 7, that I started viewing my relationship with my father differently. I felt surely he was disappointed that not only was I NOT a boy but he had another daughter after me and no son AT ALL (this speaks much to my psyche even today in that I will continually attempt to change or better things for others, even when there is no need or point). So I began wanting to do things that which were more on the tomboy side. We played catch. He put up a basketball hoop and taught me how to shoot. Unfortunately, coordination is not one of my strong suits (also still true today) and I wasn’t very good. But it was fun to hang out with my dad and I felt like it brought him some enjoyment too.
When I started 6th grade, I made a new best friend. Her name was Karen and her dad was the head coach of the high school boy’s varsity basketball team. My dad started bringing me to games where I got in some social time with my best friend but also learned about the game. That continued until I started high school where I took my uncoordinated self paired with my vast knowledge of the game of basketball and became a cheerleader (which is a sport BTW, a fight for another post!) for all 4 years.
When I went away to college, I would look forward to winter break where my dad and I would return to the gym of my alma mater and watch his alma mater play mine. We would catch as many games as we could, my dad always with a pocket full of tootsie pops and me flitting about being social while trying to keep up with the game.
When I returned home from college, my sister was in her freshman year at UVM. She had been tapped to be the person who performed the National Anthem before home games for the UVM Catamounts. With this honor, she received two tickets to every home game which she handed over to my father and I. It was the early part of the glory days. There was so much heart in this team. We began traveling for games with the team – for both championship games AND regular season games. We were utterly hooked on the magic that is Catamount Basketball.
In 2004, the America East Championship Game was played at Patrick Gym, our home court. Tickets would be hard to come by but dad & I were determined. We made a plan that he would head over at about 4am and I would replace him in line about 8. Well, when we watched the 11pm news, people were already lined up. So we decided to join them. We packed blankets and pillows, snacks and games and spent one of the most memorable nights of my life surrounded by other die hard Cats fans. Coppenrath’s return from injury to score more than 30 points in a thrilling win over Maine was icing on the cake.
The Cats went onto to lose in the NCAA tourney in the first round as a 15th seed playing #2 Connecticut. But we had hope for the next season. The final year of the magic that was Coppenrath, Jensen, Sorrentine, Hehn and Mopa Njila’s. They went on to win the America East tourney and upset Syracuse in the 1st round.
I think that was the height of my Catamounts fandom. The team has remained superb, usually finishing in the top 3 of the league (at worst). They clinched a second place regular season finish with a win over UNH last night, who handed them their first league loss this season. I still see games with my dad. Ryan has grown to love the Cats as much as I have grown to love the Patriots. It’s embarrassing to attend a game with me. It is normal for me to leave a game hoarse or without a voice. I scream during the opposing team’s foul shots. I yell at the refs. I cheer hard for my team. I am looking forward to this year’s playoff and at least one, if not two, home court playoff games after a change in the playoff rules this season that got rid of a tournament that ALWAYS required Vermont to travel.
Basketball will always have a special place in my heart. In that place is an even more special spot for the Colchester High School Lakers and the UVM Catamounts. If there is a home game and I can afford tickets, win tickets (thanks Heritage Ford & Toyota!) or am given tickets by my boss (thanks Boss!), I am there. If not, I am streaming it at home. I stream every away game I can and at least check in via ESPN app if I can’t watch it live. I already have tickets to the first playoff game and we haven’t ruled out a trip to Albany should it necessary for the Championship. I am a lifelong, die hard basketball fan. And damn proud of it! #IBleedGreenAndGold
19 options – which one is your favorite for ME and why?