:::: MENU ::::

My Father’s Caretaker and Long-Term Financial Implications

by

You know the feeling where you’re so overwhelmed with important tasks and to do’s that you can’t do anything and you end up just taking a nap?

Yeah. That’s where I’m at. Not so much with the napping part (though it sounds nice). But, hello little bloggy! Here I am “talking” to you instead of putting my head down and pushing through some pretty important to do’s.

Let’s talk about yesterday.

Longest. Day. Of. My. Life.

Reeeeeeeaaaaaaaaallllly long.

Between my 2 siblings and I (3 of us total), I totally thought I was the most mentally prepared to face my Dad’s health issues. I’m not a super emotional person. I look at things scientifically. Matter-of-factly. I’m a realist.

So I went to this appointment feeling fully prepared to hear what I thought would be “worst case scenario.” I had already in my mind an idea of what I thought that scenario would be.

Nope.

I was wrong. So, so wrong.

It’s worse.

Prognosis is not good. Again, wanting to maintain some privacy for him and not give too many of his personal details, I’m going to be intentionally vague (you may be able to figure it out – which is fine – but I don’t want to just put it all out there on a silver platter).

My dad has a progressive, degenerative disease for which there is no cure. Eventually he will die of it (or complications related to it). Not today. Not tomorrow. But his life span has just been dramatically reduced. He just turned 59 in March. Quite young, relatively speaking.

I will also tell you that the thing he’s been diagnosed with can be genetic. If one inherits the gene mutations associated with this disease, there’s a 50/50 chance of developing it as some point.

It will cut life short. Most people are diagnosed in their 50s, and life expectancy at time of diagnosis ranges from 2-10 years, with most living in the 5-7 range. My dad managed to go undiagnosed for a long time. It’s unlikely he has 5 years. Probably closer to 2. If we’re lucky.

What does this mean for me?

Well, if I have the same gene sequences, there’s a 50% chance I’ll someday have the same thing. That means my life expectancy will be drastically cut. According to here  my life expectancy is 78.7 years (white female born in 1983). But instead it might be closer to 55 or 60. 65 if I’m lucky.

What my Dad has is not curable at this time. There’s also no way to prevent it.

So I’m going to ask my doctor for a referral to a genetic counselor. I want to know if I have these gene mutations. If I have them it’s not a guarantee that I’m “doomed” (again – only 50% chance of developing the disease). But it will undoubtedly change the way I live my life. Knowing I may only be around until my girls are age 30; knowing I may not have the long retirement we all dream and plan for; knowing my life may go in a very different direction than what I would hope.

Unfortunately for this get-out-of-debt blog, many of these long-term implications are financial in nature. I certainly don’t want to leave my family in financial ruin (and I still have every intention of paying off all our debt). BUT I’m not going to put off vacations to once a decade. I’m not going to live bare bones with the hope that someday I’ll be able to live this fabulous life full of fruits and riches that may never end of happening.

Maybe I’m still in a bit of shock and some of these feelings will fade. The emotions are raw right now.

I’m devastated. For my Dad. For my siblings. For me. And for my daughters (God, please don’t let them have this gene mutation!!!)

Sorry to be such a downer today, but this is literally ALL I can think about and I always try to be open and honest with you all. It’d be completely phony to act like nothing is wrong when it feels like the ground has just opened up beneath me.

 

So emotions aside, let’s talk about genetics. And money. Specifically….money for genetic testing.

Anyone know anything about that? It’s probably expensive, huh?

I changed my insurance. I was going to do a Health Savings Account, but I had to switch to a PPO. There’s a chance my Dad may come to live with us for a bit and, if so, he’ll be my dependent and added to my insurance. He’ll need a lot of care so it makes an HSA not beneficial.

Plus, I think my PPO plan will pay for some genetic testing to be done. Remember when I had a genetic screening for the gene mutation responsible for breast and ovarian cancer? That was fully covered under my PPO and my new job’s coverage is the same plan (Blue Cross Blue Shield PPO), so I REALLY REALLY hope they’ll cover some additional genetic screening to be completed. I know this is an area of intense debate. Several commenters were against my last genetic screening. But every person is different. For me, I feel like I NEED to know.

Plus another perk, with the PPO plan a vasectomy is only $30! Remember when we had that conversation?

So I’m just chugging right along. Possible big financial changes ahead (particularly if my Dad does, indeed, move in with us. Still discussing options with the siblings right now). I don’t even know what a best case scenario looks like. There is no best case. Just a bunch of crappy, more crappy, or slightly less crappy options. Just a bunch of crap.

Is it Friday? Thank goodness for that at least! I plan to spend the weekend squeezing my daughters tightly, playing the tickle monster game all day, and just generally smothering them until they tell me to go away because I just want to soak in their sweet little toddler spirits. God bless children for being a rainbow in the midst of a storm!

Ashley

Texan at heart; Arizonan on paper. Lover of running, cheese, camping, and family (fur-family included!). Blogger, motivated to get out of debt YESTERDAY! Follow along with my journey!

Latest posts by Ashley (see all)


33 Comments

  • Reply Janelle B |

    Oh Ashley, I am so sorry for you and your family right now. No idea on the genetic testing costs or anything else, but absolute kudos to you for seriously reexamining your work/life/financial balance in light of this devastating blow to your family.

  • Reply Walnut |

    Hug those kids and your husband extra long. Every day in life is a blessing, so we need to treat it as such. I will strongly encourage you to not many any rash financial decisions because part of that decision making needs to be making certain your girls are protected financially.

    Also, did you get your life insurance all squared away? If there’s any financial move to take, that might be the one to focus on.

    • Reply Ashley |

      Thank you! I’ve got life insurance, but hubs still does not (after jumping through all the hoops last summer he was denied due to his mystery illness that occurred in late 2013). They said we could reapply after a year and June was the 1-year mark so the plan has been to reapply for hubs’ to get life insurance this summer. Haven’t started the process yet, but we will soon!

      • Reply Ashley |

        Oh, I’ll also say that my job gave us (free for me) $15,000 of life insurance for each of us. It would only cover funeral/burial costs with nothing leftover, but it’s a little bit of extra insurance that we’re all covered with.

  • Reply Cheryl |

    I am sorry. I had genetic testing for my dd due to mine and my sister’s early breast cancer (both at 48). Just be there for him as best you can, money isn’t everything but can help with his care. Medicine changes so much, try not worrying about your girls, modern medicine is better every day. Cheryl

  • Reply Jean |

    Ashley, I’m so sorry to hear this news. I’m sure it was a really long plane ride home last night.

    There’s Alzheimer’s and all kinds of cancer in my (extended) family (grandparents & aunts/uncles); I’ve thought about doing genetic testing but I’m going with the ‘ignorance is bliss’ theory right now since even if you have ‘the genes’, you won’t necessarily get the disease. So Kudos to you for being brave and wanting to know so you can face it head on.

    Once the shock wears off, I think you will strike a balance between paying off your debt and taking time to enjoy life. You’ll get it paid off – just maybe in a little bit longer time frame than you had initially planned.

    Prayers to you, your siblings & your dad as you navigate this diagnosis and determine how to care for your dad, your families, and each other.

  • Reply Cory |

    Are you sure your dad would qualify as a dependant on your insurance? That would be unusual.

    • Reply Ashley |

      Yes. When I was reading through all the paperwork I’m allowed to add siblings, parents, children and spouse/partner.

  • Reply Jen From Boston |

    I think hearing that something is what we feared or worse is different than anticipating it. Hearing what the doctor had to say just made everything real, so it’s no wonder you got so upset 🙁

    I am so very sorry for you and your family. I know I’d be devastated if my mother had a similar diagnosis.

    As to more practical matters – I know the GINA, the law that protects DNA results, doesn’t protect you from a life insurance company using the results to determine whether they’ll cover you or what premium to charge. And, I think certain conditions, e.g., Alzheimer’s & Parkinson’s, must be disclosed to the insurance companies if you know you are predisposed to them. So, before you get the DNA test please do thorough research to find out if unpleasant results could adversely affect your finances.

    Again, I am so sorry about your father’s illness. I hope he doesn’t suffer much, and that you and your siblings can get in some really good quality time with him.

  • Reply Honey Smith |

    I had genetic testing for something similar (progressive degenerative neurological disease ) and while I didn’t have any out of pocket costs, my insurance company was billed over $20,000. Yes, you read that right.

    However, my insurance covered testing for my sister at no extra cost, even though she’s not on my plan (or indeed my state). So you should ask about that too.

    • Reply Ashley |

      Wow! That cost is astronomical! But nice to know that siblings may be able to “team up” with the testing.

  • Reply Joann |

    Ashley please just take a month to let thing settle and help clear your head. First of all does your insurance start at 30 days as most do at your new job? Also as a nurse I have worked with HC, MS,and ALS which I would think is is one of the diagnosis. There is so much research and so may possible cures in the future, I am sorry to say maybe not for your dad but for sure in the far future. Please research genetic testing closely, I think I am possibly over paranoid but I fear backlash from insurance company’s but also understand the pull to know. As crazy as it sounds in a dream world I would want to have it done incognito paying with cash with a different name. I know that is not possible or sensible. Just please realize what is being done with gene therapy and stay positive. I do also understand where this puts your mind set, worry about the future but also a new understanding of what is really important. Again so sorry about your news

  • Reply hannah |

    So, so sorry your family is going through this hon. Give yourselves time to process all of this, and take it easy on yourselves. *hugs*

  • Reply Jessica |

    Ashley, I am so so sorry for you and your family. I am writing here from different perspectives – I lost my aunt to a progressive neurologic illness (ALS) a few years ago, and of course we all wondered if it could be genetic (very, very, VERY rarely). I understand from a personal standpoint wanting to know this and being worried. However, I also work for a very large group of neurologists who also treat these patients and patients with similar illnesses (MS, Alzheimer’s, etc). Sometimes the docs don’t recommend genetic testing for family members… As you said yourself, it’s not as if you would change anything in your life… You can’t love on your girls or husband any more than you already do. Sometimes these things are best left unknown. Give it some time, don’t make any big decisions now. Just spend as much time as you can with your dad, take trips, have the talks you have always wanted to have, etc. hang in there 🙁

    • Reply Ashley |

      I actually said that it WOULD change the way I live my life. But I understand what you’re saying and I’m not planning to make any major decisions in the heat of the moment.

  • Reply TENN |

    One thing that may help with some of your father’s financial decisions is if your father met with a financial planner to decide how to best proceed on the financial front. Sending prayers for your family.

  • Reply Bob |

    I am truly sorry to read about this. Nothing prepares us for this kind of news and the consequences of what is to come. I would strongly suggest looking into long term care insurance or a life insurance contract with a long term care rider for yourself asap. If this is in fact genetic- you owe it to your family. I would probably secure it before you have any testing done- I happen to be an expert on this topic and would be happy to answer any questions you have.

  • Reply Rachel |

    I am so very sorry for you and your family. Prayers going up for all of you. I love your plan to cherish your sweet, adorable little girls this weekend…that is the best possible medicine for your spirit.

  • Reply Stephanie |

    Prayers!
    So sorry to hear this news. It does make you re evaluate what is important in life. Money doesn’t alway equate to quality of life and time with loved ones. Make the most of it now. You will find a balance of living and loving life while maintaining a financial focus. Having $ allows more chioices.

    Again prayers!

  • Reply Alexandria |

    I am so sorry. Crossing my fingers for you! There is a genetic disease in my family where most rather bury their head in the sand than get tested. I applaud you for looking into it and hopefully it means some peace of mind for you. (If you have the gene or don’t get tested you will worry either way).

    All of that said, I am not picking on you because it’s like the human experience. “I need to spend money and live a little!” But I personally absolutely cringe reading that. We’ve always been very debt adverse and fiscally sounds, which gets bad reactions and sounds boring, but the flip side of that is we have always spent our money on what is truly important to us, and lived our life how it is truly important to us (while not wasting time on money on what everyone else thinks we should be spending it on). We really had our life choices put to the test when my spouse had a very serious diagnosis in his young 30s. I remember even once asking him if we should cash out retirement money for a big trip, and he just looked at me like I Was crazy. He said something like, “You don’t get it. I just want to spend every last minute on this Earth with my family.” IT changes your perspective to go through something like that. Thank of all the money you have been spending on debt and what you would rather be doing with that money. You will be able to do a lot. & after all that you may just find spending time with family and not having to work so much is the most important of all.

  • Reply Messina Craig |

    Ashley, I’m so sorry for the diagnosis. I will keep you and your family in my prayers. I hope this doesn’t sound morbid, but I want to offer a little advice that I wish I was given. My dad passed away in 2005. While he had been dealing with some health issues, his death was unexpected, to say the least. I was only 28 and not prepared at all. There are two things I wish I could go back and change. First, I wish I had told him how much he really meant to me. We were very close but life got in the way. You know…kids, husband, work, friends. I know it sounds silly and I’m sure he knows, I just wish I had told him. So please, make sure your Dad knows exactly how you feel. Second, and I know this sounds crazy but the thing I miss the most is his voice. I have pictures and even some videos with a little clip of his voice but not enough to satisfy my craving to hear his voice again. Please invest in a recorder and record some conversations or just every day happenings (with his permission, of course). Also, maybe record him reading a story or something to your girls. My son was only 5 when my Dad passed and he only has vague memories. Again, I hope my advice doesn’t offend you because I don’t mean it to seem weird or morbid. I wish you and your family the best always!

  • Reply Elaine |

    I agree you should not put off vacations and other shared experiences. Even though they can be expensive do it anyway. My first husband died at age 50 and I’m so thankful we went on vacations with our kids every year. Those are some of our most cherished memories now. No one is guaranteed a long retirement with plenty of resources and the health to travel,etc. I am sorry for your dad and your family. May you all have the strength to deal with it and the peace to accept it.

  • Reply Shannon |

    I am so terribly sorry. I just turned 46 and my mom died from ovarian cancer at the age of 54. She was diagnosed at 51. I went for genetic counseling and they wanted to do several tests. I was told my insurance would not cover it unless I had a history of cancer. Ummm, hello, then what’s the point! Anyway, it would have cost over $7500 out of pocket. I opted not to have the test and to just do everything I could to minimize my chances. I am also a realist. I go multiple times a year for pap smears, internal sonograms, etc. I hope your insurance will cover the cost. I try to live my life to te fullest, but stay aware of my body and any changes. I will be praying for you and your family.

  • Reply Babs |

    Ashley, I’m keeping you in my thoughts. I lost my Mum when she was only 51 to ovarian cancer so understand the feelings rolling round in your head atm. You are right to want to know but sometimes I think I’m better off just making the most of my time with loved ones and the future will bring what it brings. The only thing I would encourage is taking photos and as Messina said recordings of your dad’s voice. I have very few photos of my mum as she didn’t like the camera. Now, however much I hate it when the camera comes out I’m making sure that my family has plenty of photos of my ugly mug. best wishes to you all

  • Reply T'Pol |

    So sorry for your Dad Ashley. You are in my prayers and thoughts. Just try to make the best of your remaining time with him. I lost my dad when I was 27 and when he was only 54 within a day. Totally unexpected; due to an aneurism of the aorta. It was such a shock. Thankfully, he knew how much we loved him and we were a happy, tight-knit family. So, there are no regrets. I thank God for that every day.

  • Reply Kate |

    I am so sorry to hear this Ashley. It’s hard enough to deal with the illness of parent, let alone when it has implications for your own health.

    Genetic testing is always the most accurate when performed on the affected individual. Meaning- your father should be offered testing first to see if a causative mutation is identified. If so, testing for you and your siblings would be for a known mutation. Known mutation testing is significantly cheaper (ie, may be a couple thousand for your father, but closer to a couple hundred for you). Every insurance plan is a little different with coverage, but a genetic counselor should be able to give you a ‘worst case scenario’ financially. A genetic counselor should also talk to you about life/disability insurance. As a previous poster said- GINA helps with health insurance discrimination but not life or long term disability. You will want those set up before you get the test. And again, I would encourage you to talk to your father about him starting the genetic testing process. Much, much more informative.

    Everyone is different when it comes to whether or not they want genetic testing. Ignore all the advice here and just do what feels right to you and your family. There’s no wrong answer here. Hang in there!

  • Reply Judi |

    I’ve been away on business and just caught up on the BAD blog. You have been through such a whirlwind the last few months with a new job and now this medical news with your father. I am sorry for you and your family and will keep you in my thoughts and prayers. I had an issue with genetic testing, my mother had breast cancer below the age of 45 and when the tests for the BRCA mutations came out insurance would cover her testing and then her children if she tested positive, but not if she didn’t get tested or if she didn’t have the allele. Unfortunately for me she didn’t want to get tested, it was a weird mental block where she wanted to put the cancer behind her and didn’t want to think she could have passed it on (for anyone reading this please don’t poorly judge my mother it was such a difficult time in her life for multiple reasons that are too complex to explain). Luckily the company that does the testing is in my town and through calling a friend that works there and then getting in touch with a manager and explaining my situation they tested me and my sister for free when we took a before and after survey as part of a clinical trial. Maybe if you contact the company they can help you out with a discount or they may have a clinical trial going on

    • Reply Ashley |

      Wow! Thank you for sharing this story! I’m so sorry for your Mom’s situation, but it’s great to know that it might be possible to call, speak to a human, and try to negotiate or work a deal to get tested!

  • Reply Alexandra |

    Oh wow, Ashley. I am sorry to hear your bad news! I don’t have any advice, but I agree with your approach, and I hope it works out with your insurance to get the genetic testing done. Your family will continue to be in my thoughts!

  • Reply Susan |

    Thoughts and prayer for you, your Dad & the rest of your family. I have family members who had ALS, Parkinsons, Alzheimers or MS. None of them are easy roads to walk.

    It is great to be frugal – but we do also need to keep the perspective that today is the youngest and most likely, the healthiest, we will ever be. Don’t put off enjoyment of your money and your life until retirement – we are not given any guarantees. My husband and I really like to travel, but we have limited vacation time and, like everyone else, limited money. 🙂 I drive a 15 year old car, don’t clothes shop unless it’s necessary and food shop at Aldi so that we can take a cruise every 2 years. Those memories we are building are priceless.

  • Reply debtor |

    oh wow. i’ve been gone a while. just wanted to express my condolences and say best of luck with whatever you decide. Enjoy each day and I hope your dad is not too down about this and can still appreciate each day.

  • Reply Ashley |

    Thanks to everyone for the kind words! I didn’t want to reply to each person individually because, as I’m sure you can imagine, it’s just too taxing to dwell on the topic constantly. So please accept my blanket “thank you” to all for your kind words, suggestions, insights, encouragement, prayers, etc. etc. etc. I’ve read every single comment and they mean the world to me! I appreciate it more than you all know! ((hugs))

So, what do you think ?