Tuesday, October 14, 2008

Tough Decisions

I wrote, back in August, about my Mother's Alzheimer's, and a glimmer of hope that she had something else altogether. Since then, I've taken her for MRIs and blood tests. It has been 2 weeks since we met with the Neurologist for a follow-up: Alzheimer's it is, or as close as they can diagnose. "Severe atrophy of the brain," he told me. The last MRI we had indicated "advanced" atrophy. We've graduated to severe. Rats.

We discussed medication. There's nothing out there, really, that will help this. I asked him, then, about the medication she's on, Razadyne. It costs $182 a month for this one prescription. 1 pill a day, $6 a pill.

Razadyne. $2200 a year.

Have I mentioned that my Mom lives on Social Security? She has health insurance. She has Medicaid. And still this 1 prescription alone takes up roughly 1/5 of her annual income. (Oh, and she has 5 other prescriptions, but let's don't get me started.)

Razyadyne, then, Doc: Is it doing any good?

Probably not, he told me. The effects are most likely minimal, and not changing the quality of her life in any way. She scored 8 out of 30 on the test he gave her that day. He said she may score a 7, without the Razadyne. In essence, she may or may not be able to name the season, or the day of the week.

"It's up to you," he told me, about continuing onthe Razadyne. Each family feels differently. Personally, he said, "Skip the Razadyne and put the money towards good food or something she enjoys. Cable TV, books, movies."

This has been a torturous decision for me. Man, when you only have 8 points left in that little head of yours, it kind of seems like every one is kind of precious. If I take her off the meds, it may not affect her, but what would it be like, at this point, to have even slightly more deterioration?

But is coming up with the word "Autumn" worth $182 a month? Isn't Meals on Wheels, or a few field trips with Adult DayCare organizations money better spent?

I just paid for the next month's installment of Razadyne.

I am strongly considering skipping it, next time around, and watching her closely.

I can always put her back on it, yes?

Ow, my head.

25 comments:

  1. Wow, you're not a kidding tough decision. I don't know anything about the drug but it sounds like trying her off the meds and just observing her isn't a horrible idea. My thoughts are with you. Remember to breath.

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  2. Decisions, decisions. Only you can make them no matter what anyone says. Of course a bit of advise from the professionals does not hurt. Be well...

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  3. Since the doc said the med is hardly doing any good, it doesn't seem wrong to try stopping it for a while and monitor.

    Whatever you choose to do, I hope all goes positively well.

    {{Hugs}}

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  4. Yikes, what a tough and scary decision to make! I would tend to take the doc's advice, stop the med, and spend the money on what she might really get something out of - if only for the moment. If it turns out the drug was helping more than you thought, then maybe that will end up being the thing she gets the most out of. I was so hoping for y'all that this would turn out be something other than the Alzheimer's. :::sigh::: Hugs...

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  5. All I've got is hugs for you. I don't envy your position but you obviously love her very much: whatever you choose, it will be for the very best reasons x

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  6. All I can offer are hugs of the cyber kind.

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  7. Damn, you're in a tight spot. Being the sole decision maker on your beautiful mama's future thought capacity is an unbelievably heavy load to bear. I wish there was a clearer sign on which way you should go. Sometimes there will never be any indication that you are doing the right thing. Sometimes you just have to make the decision - any decision. No matter what, though, any decision you make will be done out of love for her. You guys are in my thoughts.

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  8. That is a tough one. I think I would go for the take her off decission for this reason. It sounds to me like the doctor is giving a lot of "this may work" and "try this" lines. Lots of them do that. Also I would start her on some omega 3 suppliments. You can get them at a local health food store. You doctor will probibly deny that they will help at all but there have been a lot of recent studies that indicate that they may slow down and in some cases reverse this disease.

    I urge you to try it. I am taking some suppliments and they have helped me with other things and I have noticed that my memory is improving. I say it is worth a try.

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  9. Thats a hard call. But I know you will do whatever you feel is best. And I know that your mama is in great hands. You love her so much.

    Hugs.

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  10. Anonymous3:41 PM

    I spoke with my neighbor who is a retired pharmacist (recent) and his mother and brother had alzheimer's. His opinion is that none of the drugs do much good. The drug may be slowing down the symptoms slightly, but probably not enough that its worth the cost. Use the money for something else... or save it for when she'll need additional care. --jody

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  11. From what I've seen and experienced with the people I knew or knew of that had Alzheimers, most of the drugs are a tad better than placebo testing and albeit I'm no doctor, but should my sole parent that is left, which is my father, ever suffer from that damned disease,I would agree with the doctor and some of the comments,don't buy the meds,spend it on things that make your mother comfortable and save the rest for what may be something that can really help or she needs in the future. I like what farmgirl said and let it resonate that your decision is out of love, and Mim said breath which is very important as my martial arts instructor told me once, treat all difficult paths with focus and as one long exhale. Kingsize hug thrown at ya from the Big Apple gnightgirl.Exhale.

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  12. I'm sorry you have to even think about these things. You're a wonderful daughter and you'll do good by her - as always. She really might get more from cable tv or a special outing now & again. Thinking of you. I know it's hard. xo

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  13. Lori, such a difficult decision. Damned if you do and damned if you don't. I guess it really comes down to quality of life. If her life would be better with the meds, I'd pay; if not, I would make her as comfortable as possible. I'm so sorry.

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  14. Sorry to hear that it was confirmed as Alzheimer's - that is a bummer.

    Over here there are 3 drugs of that type which can be prescribed, from my experience it did not appear to make any difference. I would go with taking her off it and monitoring closely.

    The money saved will be better spent on more care when she really needs it.

    Watch out for the first signs of her failing to recognise her own home, in my case it went from a mild expression to return "home" to an actual attempt to find it!

    Hope that you and your mum never end up in that place.

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  15. Thanks you all for your input and support—what would I do without you guys?

    I am going to give it a shot at taking her off the Razadyne--Yeeks! So scary!

    And DBA Dude, that reminds me that I've been meaning to order a bracelet for her, with my number on it, in case of emergency. She usually goes out only to let the dog out, but I still need to take precautionary measures to avoid potential future disasters.

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  16. Ugh....tough one..


    But that's exactly what I would do. Put the money to better use on something she'd really rather enjoy and just sit back and watch the effects.

    If they are indeed minimal, you can always put her right back on it.

    That's just my opinion....

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  17. So sorry to hear that it is Alzheimers. Sounds like a good idea for your mom to wear something with your name and phone # on it. With this disease you never know when letting the dog out is going to be "let's go for a walk" and not remember how to get home. My MIL has Alzheimer's and is at a point that she doesn't even know her sons name. This disease is hardest on the caregivers because we know what is going on. MIL doesn't have a care in the world because she doesn't remember anything. Thoughts and prayers are with you and your family.

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  18. Anonymous7:45 PM

    Lori, sorry that they didn't find a miracle cure for your mom. You know that you and your mom are always in my prayers. Love ya, Kelly

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  19. You've made the right decision. That money can be better used giving her enjoyment. Rest easy at night knowing you are doing everything in good faith and with love.

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  20. I know you will do the right thing and you will know what that is when the time comes. She is blessed to have you.

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  21. I usually see a new post here once in at least 2 days. Not this time.

    Hoping all is fine and you are just keeping super busy! :)

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  22. geesh. I know. We finally stopped the drugs for my Dad....doesn't make sense at a certain point. Thinking of you.

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  23. So very sorry about the diagnosis and the agonizingly tough situation. I see that in a comment you say that you did decide to stop the meds, which I think is probably the way to go. So hard! Thinking of you and wishing for the best...

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  24. Anonymous4:22 PM

    I go this site for generic prescriptions for medications not yet approved for generics in the US. www.4rx.com - They have generic Razadine (Galantamine HBR) 60 tablets for $125, and then usually $30 for shipping. I have used several medications from them and they work just as good as the name brands in the US. Good luck!

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  25. Anonymous7:59 PM

    Razadyne (generic name galantamine) is now available as a non-branded generic. Your doc should be able to prescribe this. The market leader, Aricept (generic name donepezil) goes generic in Dec 2010. These drugs and Exelon (rivastigmine) are all in the same class. They improve symptoms, but do not stop the worsening. Some patients respond to one drug better than to another. Another drug, Namenda (generic memantine) is a different type of drug and is approved for moderate to severe AD, but is often used in milder patients.

    Overall, these drugs have modest effects and not all show a benefit. It's hard as a caregiver to figure out if your loved one is showing a benefit. If you were to stop treatment and see a drop, then that suggests it is working.

    A 2-year study of Aricept v placebo in England did show an advantage for Aricept after 18-months but not after 2-years. So, these drugs may not keep their potency for a long long time.

    Hope this helps.

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