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Hello everyone....I am having a hard time knowing what to do. My mom was dx in late May with nsclc and is starting chemo and radation on Monday. My problem is my mom is sooo doped up and has completly checked out. She cant remember what the hospital and Dr office needs when they call or what instructions they give her so I am always calling around and double checking appt. times and test instructions. She gets things all mixed up and turned around...So I need advice on two things.....

1. Could she be over medicating herself...I think she dosent think her meds are working unless she is extremly High. Not able to think or almost speak.

2. Should I have the hospital and Dr office call me insted of my mother...I am so torn on this issue because I feel strongly that she needs to be as active and knowlegable as possible about everything. Things just seem so much harder because of all the confusion.

Any advice???????

Thanks Kim

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Hi Kim

I think it might be a very good idea for you to let the doctors know about your mom and the medication issue. If she is over medicating that is obviously not a good thing. If she is over medicating to "dull" her senses so she can get away from the cancer issues in her mind, perhaps an anti~anxiety medication would be more appropriate.

If nobody has mentioned this already, please get a small notebook or organizer so you can write down the dr's instructions and any questions you may have. It is also helpful if you can obtain copies of the test results etc.

You and your mom and family remain in my thoughts and prayers and I wish you all the best.. Please keep us posted..

Chris

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If you are within driving distance to mom have Dr call you for now I think. Do you plan to go to appointments with mom? if you do get an organizer and write down everything. list of Meds, apptmnts, tests, results, questions you or mom have for Onc. I do not know if this is feasible for you to take Mom or who is taking her. Keep 2 copies of notebook organizer 1 for mom and 1 for you if you ar enot close by Mom. Let me know if this helps you out and If not might have something else to help out.

2) if over medicating would lowering the dosage and having Onc explain help? Just a thought.

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Thanks for all the wonderful advice, I really appericate it...I really do.

My mother lives alone and she is only about 22 miles away...My twin sister are the ones that take her to every appt. and test. We have to travel about and hour and a half to get to her doctors office. I am trying to talk her into staying with me while she goes through her chemo...She is insistent on staying at her house even tho she knows that I cant stay with her because I have 4 kids at home. I want to help her with her meds and when she starts to feel awful. I guess we will have to wait and see what happens.

I do keep an appt. book and try and write everything down but with scheduling conflicts between chemo and ratation they tend to change appts all the time. I am not really impressed with the Dr. office because they seem so unorganized. But because we live in a rural area its the only place for about 150 miles. We truly like the Doctor he is wonderful so I guess it makes up for all the other stuff.

Maybe I am just feeling sorry for myself because she wont let me help her in the way that I want, or the way I think she needs...I feel like the table has turned and I am the parent and she is the child....when does that happen....It seems like it happens overnight.

Am I the only one who feels like this?

Guess I just needed to vent....Thanks for listening.....Kim

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(((((KIM))))))

I hope she changes her mind and stays with you. Would make things much easier, maybe safer, and certainly you can create some precious memories.

Also, a pocket calendar to match my moms was my best friend. I also made sure the dr's had me on their list for releasing info over the phone.

Prayers for your journey,

Kim (also)

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Kim, I think your mom is afraid to show how scaredshe is right now. this is huge Chink in her armor. Moms are like generals in the army. Big and Tough and fearless. Now she took one in her achilles heel and is scared. She does need someone to stay with and take care of her at least initially until the reality of the New Normal starts in. This is a rollercoaster ride and I believe she is on the downhill run right now. Until she gets to the flat straightaways She should stay with someone if not alternate people since you are all so close by.I would suggest telling her to spend some time with each person for a little while until things stabilize and even out with Meds and treatments. Gotta LottaFun to have toggether and might as well start now. This is bumpy but we will help you all enjoy the scenery along the side of the road for now. Good Luck and saying prayers

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Hi Kim:

I hope your mom backs off on the meds a bit and perhaps relys more on anti anxiety drugs. I have had no problems taking care of myself for both of my chemos, but if your mom is high all the time, that makses living by herself problematic. Keep pushing for her to stay with you. Or, alternatively, tell her she is going to have to back off the meds that make her loopy if she is going to continue to live by herself. Talk to her oncologist about the medication. Ask yor mom to sign a waivier (maybe she already did) so that you can have access to her medical records to keep copies in your organizer. Good luck.

Don M

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Kim,

my dad was very much like this. In his case, he never was a medicene taker before he got diagnosed. Even if he took his meds exactly as described, he was always foggy headed, didn't remember things correctly or not at all, and came to rely on me for his medical care almost immediately.

What I suggest is a family member always being at every doctor's appointment. When that is not possible, a small hand-held tape recorder works to capture the appoitment for later reference.

You can also sign a document at each doctor's office that allows the medical team to give you updates over the phone and to call with any questions you may have.

As far as the medications, organizing them for your mom would help to ensure she took the right dosages at the right times.

I color coded the tops of the medicenes and wrote out a medicene schedule AND I also got those daily plastic medicene dispensers and filled them each week.

I hope some of that helps. I know it's alot to digest on top of everything else, but it is doable! There will come a time that your mom begins to feel better adn stronger. Hang in there.

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Kim,

I feel ya! Like Katie, we came up with a system for Mom's many meds. We made an Excel chart for her, with specific instructions (when to eat before / after, etc) in each box. Mom crosses through each box as she takes it.

I live close to my Mom and have the most flexible schedule (I teach). My mom lives alone, so I try to make up an excuse to go over there every day. I wish she would let me help here more, but I struggle to accept that she needs her 'independence', so to speak. Because I am on the front lines the most, I also am in the line of fire when she is scared (better expressed as annoyance / anger). I tell myself that this is part of it, too.

Have you talked to your mom directly about your concerns? This is such a tightrope we walk. Glad you came here to vent (as I often do)--it helps to walk it together sometimes, doesn't it?

Prayers for you and your mom right now.

:) Kelly

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Make sure you and/or your sister have HIPPA authorization. Then they have to share all medical information with you. Without it, they are really not allowed to.

I can understand wanting to stay at home. When I ws first diagnosed, my own space was important to me, although I was fortunate enough to have sisters who took turns visiting me for a few weeks. Two other sisters wanted me to move into their house for the duration of my treatments. Two things - duration is on and on - and being someone who has spent 50+ years without children, adding them to the mix wouldn't have been helpful. (although I love them dearly!).

Anyway, perhaps you can find some assistance though local social agaency or the church that might allow her to stay home for now and yet let you feel her safety is assured. By the way, chem is not what it used to be - so your Mom may find she can deal quite well with it.

Good luck.

Mary

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Kim,

Wow. This has to be so hard on you. I would suggest two things, and of course these are just my opinion.

1. Get second opinions. I think this is important in terms of the drugs, diagnosis, etc. We were SO THANKFUL that we got our second opinion.

2. Don't be afraid to help manage the cancer appointments etc. This is a FULL time job...I see this because my mom is struggling, and she is not the one with cancer. Keep good records. My mom got a bag, and we call it the cancer bag. She has three ring binders, and notepads and pencils in there, so taht she can write things down and keep things organized. She has the binders to keep all documents from the docs and anythign else. When someone asks her what she is on, she can easily go to that section in the binder.

Good luck Kim. I am so sorry about the cancer.

Jen

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