I worried about my parents, grands, aunts/uncles and wondered how they were coping with Medicare or Social Security. I remember taking Grandma D to the clinic, asking what the call would cost. She wrote the check, and we were bundling up to head back out into the snow.
While I waited, one of her friends came in with her daughter, asked for their balance, since she’d forgotten her checkbook last time. The answer startled me as much as them. “Your mom has a credit balance of $3,105.00. So you don’t own anything.” What the wha???!! She’d been paying out of her pocket and the clinic was also being paid by SS.
I went back up to cashier and asked if my grandma had a credit balance? Yup, about $3,900. My dad? About the same. Me? $2,000 – Blue Cross/Blue Shield.
Why hadn’t we gotten a statement of over payment? ‘The State of Michigan only required a statement of debt.’ WHAT???? And if they died? Surely it was declared? No. I got Bessie, Dad’s and my credit back after about 6 mos – they said it was better in case a large charge came thru. Poooey.
I promised I would be alert from now on. Took a real estate course, so I wouldn’t be taken advantage of, being a woman and being single.
Worked pretty well until I developed this thing called dementia, or as I call it ‘rotting brain.’ Most recently got conned when I got Medicare and SS Disability. I was told I would receive a new card in the mail from Medicare for Rx, my BC/BS would change, and I’d be getting about $400 more a month, not paying the nearly $600 mo’ly for a full policy.
I did the Snoopy dance when my friend went to get my 1st January refill. $900. By March, this fine unknown card had saved me … uhm, nothing, and I had gone thru over $2000.
Here’s the kick. I am still paying the full Blue Cross. Next Open period?? October, starting period January 2013. Praying for us all.
So, we are still getting schnookered, and poorer. I wrote this because I was pissed, but mostly so no one else assumes private industry and government knows what they are doing, and taking care of us.
If you don’t have an advocate for things like doctor appts, or making insurance or funeral choices, a living will, a dnr and your estate (sorry that I am laughing at that one). Get one.
You can get DNR, Living Wills, etc. for free from the (your state) Catholic Conference – where I did. Hired a lawyer.
It’s hard to see my life more mucked up because of my ignorance.
Next time ask me what happens when you don’t know that you must notifify your car insurance while you cannot drive. My humble insurance pmt has just gone to $900 for 6 mos. No driving now for sure.
Papa, you know it’s Vicki cuz of all the complaints. But please protect all we anawim, we marginalized. Blessings & love to my FTD friends and families.
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Dear Vicki:
Thank you for keeping a blog on your life with FTD. Don’t ever think that it isn’t reaching people because this weekend it has reached me. My name is Vicki Lynn Kent Marshall and I just turned 56 years old. The same month I I turned 56, I was diagnosed with FTD (last month) by my neurologist. Reading your words and knowing you’re out there has lessened my fear of being ALL alone in having this ridiculous disease. I think I’ve had FTD for about 5 years, and as usual with most of us, was mis-diagnosed (with thyroid, depression.) I knew something else was wrong, though, when i started getting so lost and confused. Also, I began being so introverted and socially inept – after a lifetime of being fairly gregarious. I was a chef to a film actress in Montana and also a University Program Director, and lived a competent, productive life.
Now, it’s a good day if i can get the wash done and remember to eat something!!! I’m heading to UC San Francisco’s FTD clinic next month for a second opinion, and i wanted to let you know that I really appreciated your advice on insurance/disability/and all the legal things to tend to. I live in a state where physician assisted suicide is legal and this is an option i’m considering. Am kind of scared of messing up my afterlife, but more scared of becomming someone other than who I am, especially as that might apply to my husband of five years . . . . the sweetest, and kindest person in the world.
Just wanted to say thanks again, and that you’re in my heart. And we have the same name, (AND the same disease) so i dared to write, simply because of that!! take good care. with love, vicki kent marshall
First I have to compliment your parents on the beautiful name they bestowed upon you (giggling). Sadly, you are still a child. But I think we can be friends despite that. The social network is a wonderful thing for me, homebound, but so inadequate in giving out hugs, but I will try {{{{Vicki Lynn}}}. I am profoundly sorry to hear of your ‘changed life status’.
But do not think, for one moment, that you are lesser now than before. We are just re-aligning our life-map. Unfortunately, I still seem to get lost now and then.
My first prayer is that you won’t have FTD. On the other hand, when our guts say “nope” to all the diagnoses it’s good to have a resting place in a name. Then you can count your resources, and – not without cursing and fist waving directed to the heavens – look at the new map we have been handed, albeit a few years too late.
I’m not a theologian, but I am spiritual (some might even say spiritual). If my life gets tough, do you have an extra room I could rent? Although ‘Dr. Death’ had home roots in Michigan (Kervorkian) somehow the state didn’t embrace quality of life decisions. Go figger, eh?
From what I understand, and have in my will, is that we do not die of FTD. We die of complications, since our immune system is compromised. So I wrote in that – when I have that ultimate ‘infection’, and am no longer Vicki in any way, shape or form, I will not have anti-biotics introduced. My children had fits at the lawyer’s office, but eventually realized it is so much more natural than unplugging me from machines. I won’t say if I have a plan #2. But QUALITY OF LIFE is my war cry! And I pray it is for all of us, whose brain is dying and no one knows why.
As your name suggests, you are wise, witty and strong. We Vickis will do well together.
If you need to call me, send a message and either Jim Coyle (webmaster & buddy) or I will give you my personal phone number.
Also, check out Howard Glick’s blog (http://earlydementiasupport.blogspot.com) and also http://www.FTDSupportForum.com. My bestest of FTD friends, Susan Grant has a beautiful documentary and you can purchase a copy thru Jim Coyle. Then after that, take it to your physicians and watch it with them. There is so much they do not know. 100% of my doctors had never heard of FTD. But I’m trying to change that with her DVD – “FTDPlanningForHope.com” …
My prayers are with you, and I just smile to know I’ve a soul sister who will challenge this atrocity. And I send extra love and prayers to your husband. You may end up martyred but he will be known as a saint.
Blessings & love, Vicki Lynn
lol, some would say I am religious (Roman Catholic), I meant to say. Worked with the church for over 40 years and my brain just betrayed me and it was all gone. We need good editors, eh? xo, V
Vicki's new post on Vicki's Voice: It's so easy getting duped…. http://t.co/Jf0utddL #dementia #insurance #medicalcosts