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Posts tagged with: frontotemporal dementia

A Tale of Two Sisters

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My sister and I have not always had the best of relationships.

All though childhood, we fought like cats and dogs. We were not close AT ALL! One of my best childhood friends will laugh recalling memories of when we were 10-years-old and my little sister (then 6-years-old) and I would get into huge physical altercations. Like, ripping each other’s hair out and rolling around wrestling. And not in a cute or nice way either. It wasn’t pretty.

We were four years apart and, at the time, the gap felt as wide as the Grand Canyon. I felt like she was so young and immature and I wouldn’t be inconvenienced to let her hang around me and my friends. Due to our age gap and timing of birthdays, we never went to the same middle or high school at the same time. We had wholly different interests, friend groups, and even physical locations due to the different schools we attended.

Then a funny thing happened. After I graduated high school and moved out of my parents’ house, my sister and I started talking more. Then when she graduated high school and moved out, the frequency of our interactions picked up even moreso. We became friends. And then…best friends.

It’s now been a full 15 years since I graduated high school. Even though we weren’t close growing up, we made up for lost time in the 15 years since moving out of our patents’ house. And there’s been a lot of LIFE during that time. We were each other’s’ maid/matron of honors for our weddings. We’ve seen each other through good times and bad, through pregnancies and childbirth, through moving cross-country (twice). Through fun sister-trips to Vegas and tough funeral-visit trips. We’ve been there for each other truly during both the best and worst of times in each other’s lives. We haven’t lived in the same city for over a decade at this point and, even with all the miles between us, she’s still been my best friend.

But something has happened to our friendship that’s been tearing us apart.

In August 2015, my Dad was diagnosed with dementia. Since he had no spouse or partner, we became his primary caretakers. First, the bulk of responsibility fell to me. He was living in Utah at the time and due to my proximity (in Arizona), I was making frequent flights back-and-forth for doctors’ visits, to help pack up his house, and eventually to meet with realtors and get the place sold.

At that time, my Dad moved to Texas and since then, my sister has had the bulk of “caregiver” duties thrust onto her. I’ve tried to help as best I can, being a thousand miles away. I’ve taken over handling my Dad’s finances while my sister has taken the day-to-day/medical/hands-on stuff. Undoubtedly, she has the bigger burden. Without question. I knew the load on her would be hard. It’s not easy to be a caretaker to one’s parent. And though I haven’t shared specifics, none of us were ever close to our Dad. He was not a large part of our lives growing up. So, the burden feels double, or even triple, being that we’re caring for a person who never even really cared for us (at least in a physical sense). A person who was never really a significant part of our lives in our youth nor adulthood.

It’s been hard. Really hard. I started going to therapy, initially, for issues related to my dad’s dementia.

But then things got better for me. As we’ve moved my Dad to higher and higher levels of care, things have gotten easier and easier. Now that he’s in a locked memory care facility, we have no more emergency phone calls from police or social workers (which, at one point, were literally a weekly-occurrence). He’s well cared for, fed, and groomed. All his basic needs are met and none of it requires work or effort from me or my sister (or brother for that matter). My sister still has the bulk of responsibilities – she still goes to visit nearly 3 times a week, takes “groceries” (all food is provided, but he likes snacks in his room), takes him to doctors, delivers his prescription medication, etc. etc. etc. It’s still a lot.

Having a family member with dementia is a lot. For everybody. And for my sister most of all.

Slowly, over time, I sensed a strain in my relationship with my sister. Nothing specific that happened. But things were tenuous. I think things reached a boiling point over summer when we moved my Dad from his independent-living facility into the memory-care facility. My sister had to handle most of the preparations (touring new facilities, scheduling movers, getting things boxed and ready, etc. etc. etc.). I went out and helped with the actual move, but I had to come back to Arizona shortly thereafter. She was left to handle the aftermath. Though things went well with the move (even better than we’d expected), things did not go well between my sister and me.

And so, as things seemed to deteriorate between us, I went back to therapy again. This time with greater frequency, too. Not only was I dealing with issues caused by my Dad’s illness. Now, it felt like I was also losing my best friend. It was heartbreaking, to say the least.

If you notice the timeframe of the sister-breakdown, it occurred right at the same time that our finances got out of control. Coincidence? Well, yes and no. Some of our financial issues just happened to occur at the same time – like the ending of my part-time job and hubs’ closing his business.

But it’s so easy for our finances and spending to get wrapped up with psychological issues, isn’t it? Much of my spending during and since this summer has been for things I might consider therapeutic, even though they seem like superfluous “fat” in the budget. Things like happy hour with friends or yoga classes to center my mind. Oh yeah, and I’m still going to weekly talk-therapy, too.

I think things with my sister are slowly getting better. I’ve been working hard in therapy, developing coping techniques and skills, and surrounding myself with things to bring me joy and happiness. We’ve been talking a little more. I’m hopeful for our future.

But I’m not going to lie. The past few months have been some of the personally hardest in my life. And not because of any specific “event” (no cross-country move, wedding, or childbirth). But just because of the psychological stressors of the entire caregiving situation with my dad and the fallout it has caused between me and my siblings. I hadn’t realized what a source of social support my sister had been for me until I felt like I had lost her.

I’m not perfect. Our family finances are still in need of triage. We have so much work left to do.

Right now I’m considering myself a “work in progress.” Both in terms of my financial habits and just my general psychological well-being. But I just wanted to provide some additional context and background for why it may be difficult for us to turn things around as quickly as we had back in March 2015 when I first started blogging. I’ve been lucky to never struggle with mental health prior to these most recent years. And now that I know the struggle from the other side, I know how truly all-consuming and debilitating it can be.

If you have time and are interested, I’ve linked to two videos about dementia that have been personally moving to me:

I know this post is a little different than the traditional get-out-of-debt blog post, but I felt compelled to share a little piece of myself with you today. I hope you can take it and remember that everyone has their own inner demons and battles that we know nothing about. Especially in this holiday season, let’s do what we can to uplift and encourage others and to promote kindness and empathy for others.

I’ll be back soon with a more traditional get-out-of-debt blog post, too! <3

~Ashley


Coffee Date

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Hi Friends! I know I said it in my last post, but I’ve really missed you guys! This has been the longest hiatus I’ve ever taken since I started blogging 3 and a half years ago (<how has it been that long?!?)

So before diving straight into fully-financial posts, I wanted to just do a casual coffee date today. It’s as if we’re buddies meeting up for a cup of Joe, catching up on each other’s’ lives. See some past coffee chats here or here.

If we were having coffee today, I’d tell you how much I’m looking forward to some true Fall weather. Here in Tucson it’s still over 100 degrees F every day. I’ve been working out in the 5am hour and even at that time it’s already in the low 80s. I’m ready to bust out my fall decorations, drink some homemade pumpkin spice lattes, and cuddle up on our back porch in an oversized sweater while feeling the crisp in the air.

Exercise

Speaking of exercising at 5am, I’m training for another race. Last November I did my 3rd half-marathon. This November I’m signed up to do a Ragnar relay race. For those unfamiliar with Ragnar, these are running races that last 24+ hours. The traditional style of run is a road race, but the run I’m signed up for is a trail run in McDowell, AZ. I’m on a team of 8 and we will each run 3 legs (approx. 5 miles each) over the 24-ish hour span of time. I’m starting week 5 (of 12) of training and have really been enjoying it! I’ve always been a solitary runner. I’m not very fast and have never joined any running groups, etc. But my team (consisting of members of my department at school) has been meeting up on weekends to do our trail runs together and it’s been so fun having a group to sweat with, and to help keep me accountable when I’m not wanting to roll out of bed at 5am on a Sunday morning! Ha!

What about you? Are you working toward any goals or doing any type of diet or exercise regimen right now?

Texas Family

So much has been going on with my Texas family lately! All are located in Austin, so they were inland enough to be spared of any serious Hurricane Harvey damage. Remember that my mom and stepdad both broke their arms back in early July? They have lots of physical therapy and rehab ahead, but they’re both on the mend and expected to make a full recovery! My little sister welcomed a new bundle of joy to the world in late August! The delivery was smooth and easy and the baby has been a perfect angel – sleeps and eats well and only fusses when hungry, tired, or wet. She says it’s their 3-year-old whose been the problem. Tough transition from 1 child to 2, but they’re doing well. We believe my Dad is in the process of experiencing another step-down with his dementia. He was diagnosed with frontotemporal degeneration back in August 2015 and is currently living in an assisted living memory care facility. Frontotemporal degeneration (FTD) has been woefully understudied, so I can’t say anything definitive from a medical perspective, but several patients with FTD experience absolutely debilitating neurologic pain in the areas of their brain that are degenerating. I believe this corresponds with neuronal death. The pain is often associated with a “step down” in cognitive functioning. FTD is not a slow, gradual decline. Instead, it’s marked by periods of stasis, followed by rapid decline, then another period of stasis, etc. The periods of stasis can last weeks or months. The past few days have been painful ones for my Dad so we’re expecting another decline. His language has been impacted first and he’s really having a tough time with it these days. It’s hard for me because, living in Arizona with my Dad in Texas, our primary form of keeping in touch is phone conversations. I send pictures and letters, but we talk and/or text daily. It’s becoming increasingly challenging, though, as it upsets him when he doesn’t understand me (which is happening with increasing frequency).

How are your parents doing? No health issues, I hope?

Husband 

Hubs is doing well, but has had a tough time not working since his business closed down a few months ago. He used to be a flooring contractor but is now back in school for engineering and cannot sustain a full-time job. The cost of all the licenses and insurance were too much to justify renewal so he let the business come to a natural conclusion when everything came up for renewal. While he’s done well in school (last semester was his first one back full-time), I think it’s been a big transition for our entire family for him to not be working. He’s used to having his own income and additional spending money and it’s been tough to balance wants and needs within our family budget. I mentioned how my first full-time paycheck was a bit of a shock. Much lower than I’d been expecting. Budgeting is still a work in progress, and one I’ll be talking a lot more about in future posts. On the bright side of things, hubs is also in the process of obtaining his personal training certificate. He’s midway through the program and will be done in mid-October (juggling it along with his course load). He’s hoping to be able to pick up some part-time work after he receives his certification so that he can make enough money to cover his own personal effects and expenses while in school. He may be able to contribute a little to the household too, but even if he’s only able to cover his own wants and needs it will be a big help. Hubs has always been the “breadwinner” in our family, so having the roles reversed and being in a position where basically every expense is discussed (and budgeted) has been a change for him. (Edited to add: Check out this throwback post I wrote years ago about Our Financial Relationship for more background info.).

How’s your spouse, partner, girlfriend/girlfriend, significant other? Single? Are you on the dating scene? Any funny stories or interesting people you’ve met recently?

Kids

The kids (5-year old twins) are now a month-deep into kindergarten and they just got a new teacher! Yup. The old one, while kind, was having a lot of personal problems that interfered with her ability to do her best work. I was worried when I saw the stark contrast in what my kids were doing compared to the kindergarten kids in other classes (I’m friends with other moms and the curriculum is supposed to be the same for the whole grade). While I do feel bad for the old teacher and hope that she finds some peace in her life, I’m beyond relieved that my kids got their new teacher. She has been absolutely fabulous and it’s just the breath of fresh air that we needed. She jumped right into the role, hit the ground running, and I’m so impressed with how much the kids already love her! It gives me warm-fuzzies and makes me confident that they’re at the right school (we chose a charter school, as the public schools in our area don’t have the best ratings). They have been doing karate the past few months and, while I absolutely love it and all it’s done for them (boosting self-confidence, increasing independence, etc.), we’ve made the tough decision to cancel our membership for the time being, September being our last month. It was costing $150/person/month. At $300/month in total, we just can’t continue to afford it. It doesn’t fit within our budget. The girls do still participate in a gymnastics program, but it costs less than half that amount ($65/person/month; $130 for both per month). We like for them to be involved in extracurriculars, but can’t be paying nearly $500 a month for it!  At $130/month we feel comfortable. We also try to only do one activity at a time. So far they’ve done ballet, swimming, karate, and gymnastics. I’d love for them to be involved in some type of music lessons and I want them to do some team sports (like soccer!), but right now just be sticking with gymnastics.

How are your kids? Are they involved in any extracurricular activities right now? How do you find quality ones that don’t break the bank?

Work

Work is going great! I’m now only doing my one full-time job (up until a couple months ago I’d been working full-time plus a part-time job). I thought I’d have all this extra time on my hands once the part-time job ended but of course that’s never the case. I do think I have more time, I’ve just filled it with other things (like my 5am workouts – which used to be 5am emails and work). I also have more time to do my meal planning, shopping sales, and food prep. So we have less money, but I think my life has more balance. And with any luck (and a lot of planning and prep), hopefully I can save enough money to offset the loss-of-income from the part-time job. We shall see. One big area I will be targeting is FOOD costs. More info to come.

How’s your job? Things with your boss? Your co-workers?

 

I hope everyone is staying safe! My thoughts are with anyone impacted by Irma! I did my Masters degree at Florida Atlantic University in Boca Raton (about an hour north of Miami, right on the coast) and I still have lots of friends in the area. Thinking about all of you! Also, on this Patriot’s Day, I want to take a moment to acknowledge and thank all first responders and helping professions (nurses, doctors, paramedics, etc. etc.). I don’t have the gumption to do that type of work and our country would be lost without it, so thank you to those of you selfless enough to go into these professions! Thoughts with any/all who were impacted by the events on 9/11.

 

Hugs to you all! Stay safe out there!

~Ashley


FTD Awareness

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Hi, friends! Thanks for all of your comments on this post! I have loved reading your success stories. It has been so helpful to read about so many who have successfully navigated a mid-life career change and come out on the other side better for it. I so appreciate your support!

Today I’m re-posting an old blog (originally published here). Partly because I’ve been dealing with some serious FTD-related issues lately. The short story is that my dad has now turned to self-harm when he becomes frustrated (which is always). It’s created several mini-emergencies, as he’s cut himself with a razor, hit his head with a hammer in Walmart, and frequently punches himself in the stomach/gut area. My siblings and I are panicked trying to get these symptoms under control. He has a psychiatrist appointment today so – fingers crossed – we can tweak some meds and help reduce some of his anxiety and frustration. I just cannot even convey how sh*tty this disease is. And it gets virtually NO attention. There’s no funding for medical research whatsoever and, currently, there are NO medications available to help slow the disease’s progression. It’s just heart-wrenching to watch.

So, while I have this platform with a little bit of readership (thanks for reading!) I just want to do my part to try to raise awareness. You may also be interested in seeing this very short clip from the Today show. An expert in the field answered some questions about FTD, discussing key differences between FTD and Alzheimers. Check it out if it interests you.

Have a great day!

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It’s October. We all know what that means. Breast cancer awareness month, right? Pink everywhere!

Which is fantastic! We all know someone who has been affected by breast cancer.

But do you know what other “awareness” week is going on right now?

Frontotemporal degeneration awareness.

Fronto-What?

Frontotemporal degeneration. Fronto (as in the frontal lobe), temporal (as in the temporal lobe) degeneration (as in…degenerating).

So, I guess the cat’s out of the bag. This is what my Dad’s got.

It’s a terrible, dehumanizing, crippling disease. It destroys the very essence of the human being.

Right now there is no cure. Unlike Alzheimer’s disease, there aren’t even any treatments to slow progression (just meds to help manage side-effects, such as OCD-type qualities or anti-psychotics to help assuage delusions/hallucinations).

I’m not going to pretend to be an expert. I’ve read plenty, but we’re still relatively new to the disease as a whole, so I’m not going to spout off a lot of statistics at you. You can read about it for yourself. 

Initially I wasn’t even going to post anything. I’ve never revealed my Dad’s illness. But why suffer in silence? This dementia is the second most diagnosed dementia for people under the age of 60. And there is a serious lack of funding right now for it. Mainly because (I can’t help to think) no one has heard of it! What is it, even!? What does it do?

In short? It wreaks havoc. It causes the person’s thoughts and behaviors to change. It will likely force the diagnosed individual into early retirement (or could precipitate an untimely termination). It robs the person of his or her very essence, changing fundamental personality traits.

Frontotemporal degeneration awareness week spans from October 4-11. As you are inundated with breast cancer awareness messages in social media, maybe take a moment to think about this lesser known disease that is every bit as crippling and debilitating. This disease for which there is no chemotherapy or radiation treatment. For which those diagnosed are rarely seen as heroic; no imagery of warriors “battling” the disease. Instead, most are ostracized. Their odd patterns of behavior cause people to cut social ties, forcing them into an increasingly withdrawn, sad, and lonely world.

Given the closeness to home, you can bet that this is going to become something very near to my heart. As we get out of debt, I’d love to be able to start donating to the Association for Frontotemporal Degeneration to raise awareness and provide funds for research. With any luck, one day we’ll have medications to help slow the progression of this wretched disease. Seeing the physical and mental anguish it causes is nothing short of heart-breaking. Research is needed. So spread the word.

Hugs to all!

“Be kind, for everyone you meet is fighting a battle you know nothing about.” (source)