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I've Not Even Hardly Begun and I'm Crying


Linda661

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So glad I found this site just a few days ago. Well, I've finished my 8 pages of questions for the doctor (chemo oncologist) tomorrow and I just got back from seeing mom in the nursing home....she was recovered nicely from her 1st chemo session this last Monday when I saw her late Thursday....well, her at rest oxygen sats went into the 70's "while I was gone" and she was put on 7 liters of continuous oxygen, instead of 5 (we did just drop that to 6 1/2 liters today since her sats were 92-94 while I was there; that's worse than where we were before though). Her respiratory therapy sessions have been increased as well (so much to keep up with -- things seem to change so fast right now). She did have a "bad" 1st chemo day as well, so I am not sure if this is a delayed reaction thing or not -- I am still too much in the dark about what to expect before I can bring her home for caregiving.

I told mom all about this site and what I found in my research (only told her the encouraging things -- she's glad I found you guys and loved the encouraging info.....even the thicker hair regrowth thing that some have had! I think it helped too that I could tell her about folks in her age group and more senior than her with similar diagnoses who are doing just great); told her about having my questions ready and that many of them she might not want to know the answers to: she agreed: she just doesn't want to know about side effects of things and the "downside" stuff that I need to know to help her at home (and just plain coordinate things/info. exchange at the nursing home, even now). I really think that's wise too -- no sense in her starting negative "self talk"....she's not saying much, but she's got to be scared silly. She did come up with a couple of her own questions that I hadn't thought of for me to add to our list....I was encouraged by that.

Ought to be interesting to see how I handle this one with the doctor tomorrow! Yeah, "I want to know the answers to this, this, and this,....and oh by the way, don't tell your patient the answers!" Oh my oh my......HIPPA or whatever the initials are don't help the patient or family at all! So frustrating!!!! My gut feeling just doesn't like her changes this last week so my sonar is way on guard now......I just start to cry at times with this -- don't want to lose parent #2 due to something I could have prevented along the way.....all my frustrations from my experience with parent #1 is still too fresh.

I know it's the patient's journey....I just don't want the mistakes and what I perceive as a medical community "doing it's job" (barely) rather than having the time to care about their patients to take her from me sooner than she needs to.

Oh my....now I am gonna' cry more....."It's a wonderful world" just came on the radio.....

Thanks for just listening!

Linda

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Well, Linda, if you're crying, you're feeling and are past "numb". First I had disbelief, then I was numb...can't tell you exactly when I started feeling again.

I don't understand your line above about preventing this along the way. What exactly do you mean by that? Accept that some things just happen - it has nothing to do with who you are, what you've done and where you've fallen short. Point blank, shi_ happens.

Get your questions, see if you can meet with her oncologist (have her sign the permissions) without her present, after the two of you ask her questions and get the answers so you understand them. Maybe she can step out of the room while you talk to the doctor - and maybe not. Some of the answers to your questions can be gotten from the staff. Don't ask for numbers, just live each day to the fullest. None of us are guaranteed a tomorrow, after all.

As for her declining health, chemo is poison. From all I've heard, it gets worse before it gets better. Keep an eye out for all the warning signs the staff can give you.

Good luck to you both,

Becky

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Linda -

You are doing everything right....hoping this week goes as well as can be expected for you. Becky is right on...do see if you can meet with the doctor separately. There were many questions we didn't want to ask in front of my mom...and that I think my mom didn't really want to know the answers to.

And BTW, crying is good. I just realized today that I haven't worn mascara in 6 months. :)

Holly

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Linda, it sounds to me like you are handling everything just as you should. Your mom is very lucky to have you on her side. Just keep reassuring mom and keep her spirits up. It's truly amazing what a large part of recovery depends on the attitude of the patient.

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What I mean by preventing is that a big majority of complications and deaths actually occur from medical mistakes & oversights, rather than the disease itself -- you would be amazed (well, maybe you wouldn't) how much work I put into checking out meds and coordinating information between docs and skilled nursing staff to be sure that everyone is on the same page. Things just get missed by people -- especially with so many new meds being in mom's life now so fast.....I also spend alot of time just observing how mom is reacting to her meds and now her therapy -- a 10 minute look-see and a few questions by a doctor isn't close to enough from what I have seen.

There have been plenty of examples of the need for this kind of support in my past experience with my dad. For him too, it involved my going after the doctors to prescribe him a medication for severe restless leg syndrome that drove him "up the wall" with discomfort (just a symptom that came with his condition), but wasn't taken seriously enough by his doctors -- it's really a quality of life/overall comfort/symptom relief thing: I am not saying I can prevent the natural course of things for anyone --

Hope this helped clarify where I am coming from there.

Linda

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and oh by the way, don't tell your patient the answers!" Oh my oh my......HIPPA or whatever the initials are don't help the patient or family at all! So frustrating!!!!

I hope you get some answers and your mom fares well with her treatment.

just an FYI, HIPAA (Health Insurance Portability and Accountabilty Act) only applies where the patient has not authorized the release of information to a family member, or other representative. if your mom is lucid, just have her sign a statement releasing the docs to talk to you (and/or whoever) about her medical information. the statement should acknowledge HIPAA in some way. if she's not lucid for any reason, someone should be appointed power of attorney/proxy, anyway.

don't let them use HIPAA to keep information from you! it's an onerous law for health care pratitioners, but easily handled by caregivers via a patient-signed release.

good luck, and keep us posted!!

xoxo

bunny

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