I Am So Upset.....

My dad had a 2nd surgery to remove the regrowth of his GBM Stage 4 tumor that was originally removed in July 2007. Feb of this year we learned of the new re-growth...and in April it had grown quite a bit, enough for them to say they could remove most of it. My dad is 65 and his tumor location is on the left temporal side.

 Surgery went excellent. A week ago today. He is still in the hospital recovering. Everything seems to be functioning quite well on him except his speech. He is having so much trouble(which we were told would happen) and he can't express his thoughts to me at all. He knows what to say, but it doesn't come out. I think he looks great and was wondering why he couldn't come home just yet. He does live alone, but we as a family could set up a schedule to help out. Anyhow...I haven't had an update from the doctors since his surgery. My dad can't relay the messages they've been telling him...or he tries and I don't understand what he's trying to say. Which makes him angry and that's not pretty either.

Anyhow..today the nurse said she couldn't tell me anything because of Hippa laws and he said not to worry about it when they asked HIM if they could update me. I am SO ANGRY right now...I don't even know what to do. I left the hospital in a rage...which doesn't help anything does it? He obviously can't express himself and when they ask him if they can give me info he just says "I don't understand" and tells me..."Don't worry about it"...and they are freaking listening to him. He has noone but my brother and I. All my dad was worried about today is to get him his weekly lottery tickets..That's it!!!

I know this disease is horrible and it takes away the person that you knew...but how much does he really understand and not? I've been so busy with trying to keep his live "normal" while battling this disease...running his business, paying his mortgage, being a caregiver, support system....you name it...and today I feel like throwing my hands up with all of it...especially when he won't cooperate w/the nurses and let them fill me in on what's going on. He's blaming me that he's at the hospital and that I told them he has to stay. Well I tell him he's wrong about that...he just shrugs his shoulders...like...that's what they said and it's your fault. Makes me feel so bad and sad inside.

 This is a major vent so thanks for listening. I'm just wondering about those hippa laws...how effective are they when apparently my dad can't express his information to me and clearly is not understanding what they are asking of him. How do I lift that law for him?

Jill

Vent away!  It's good for your soul and sanity!

Yes, your father is "confused", having recently been through my second crainiotmy, I know what "confused" is.  It will get better.

I let my Dr's know 1st off they can talk, tell my family ANYTHING they needed/wanted to know.  There are things I personally don't want an answer to, and they needed to know EVERYTHING. 

 Perhaps contact a social worker at the hospital in getting those Hippa laws figured out for you.  Especially when your father is in a confused state.

Hang in there, keep the Faith!

Hi Jill,

My mom is 49yrs old and has GBM IV.  I had to get a power of attorney to handle all of her affairs...even at the hospital!! 

She can't sign documents, she gets confused when tryng to explain something or when someone is talking to her she frustrated because she don't understand.

 I understand your frustration.  HIPPA stinks in this aspect!!    But check into getting a Durable Power of Attorney (without limitations).  Get with the case workers/manager at the hospitals and let them know once you get it.

I hope this helps!!

Take Care

Kim

On 4/18/2008 Kimba0612 wrote:

Hi Jill,

My mom is 49yrs old and has GBM IV.  I had to get a power of attorney to handle all of her affairs...even at the hospital!! 

She can't sign documents, she gets confused when tryng to explain something or when someone is talking to her she frustrated because she don't understand.

 I understand your frustration.  HIPPA stinks in this aspect!!    But check into getting a Durable Power of Attorney (without limitations).  Get with the case workers/manager at the hospitals and let them know once you get it.

I hope this helps!!

Take Care

Kim

Jill,

I hope that your father's ability to communicate improves rapidly.  I definitely agree with the suggestion that you get the hospital social worker on your side.  It is imperative to your father's well being that he has an informed loved one making decisions for him right now.  It is extremely important that somebody close to him and perhaps more than one person has both medical power of attorney and a financial power of attorney.  They are separate documents and both are extremely important.  If your father's condition does not improve in the near future, you may need to go through the court system to get guardianship of him.  The laws from state to state probably vary so you would most likely need to contact an attorney to do this.  The financial power of attorney will help you if you need to communicate with his bank or deal with the phone co., electric co., etc...those folks won't talk to you without a financial POA.  If his credit cards were stolen right now, you would have a difficult time closing the account and refuting charges.  It sounds like you must be really overwhelmed with everything you have to take care of right now and this is one more thing.  Unfortunately, it is extremely important.  My best wishes to you, your father, and your brother.

Jackiekay

Being a RN, I agree HIPPA stinks & complicates things more than it should!  With my mom's care, prior to her surgery, we got all the POA's in order - both health care & durable.  While she was hospitalized I went everywhere with them in hand (literally, I had a folder!).  I actually handed the nurses a printed copy with my address & phone numbers to put on the front of her chart.  As a result, it was smooth sailing.  As a nurse, if family were present in the room & the patient is able to respond, I would ask if it was ok to discuss their case at that time or if I should come back some other time (to talk personally with the patient).  More often than not, the patient was fine to have their family there.  If the nurse handles it correctly, they should not get in trouble with HIPPA laws - it is when a medical professional uses the information in a malicious way that does harm to the patient.  If it is to benefit the patient & to coordinate care, the person should have nothing to worry about.  I don't know if you can request the nurse to have the doctor paged so that you can meet with him/her? Surely under the circumstances, they should work with you - perhaps take an angle on that you are in need of coordinating his care upon discharge, however, unless they share his status with you, you cannot proceed ahead with planning (?).  Of course if you have POA's this is all a mute point - they need to be talking to you!  Hang in there :)

 Nikki 

Mom Dx GBM10/07w/resection; post-rad/Temodar; on Temodar now & stable MRI's

Thanks for all the replies. I do have a POA for healthcare on file at the hospital and also a Financial POA. The nurse, actually their were 2 nurses told me the POA means nothing and that my Dad has Epasia...so he does understand and is coherant, just can't talk. I said so all the information your giving him...he can't tell me. I thought I was going there to bring him home and obviously that wasn't the case and I wanted to know why? The nurse asked my Dad if it was OK to talk and he didn't want to talk about it...so they wouldn't tell me a thing. Only when I was leaving and not happy did she offer to page the doctor for me. Well...you never know how long that takes and I was irritated. I had called at 9AM for a nurse to call me and went up to the hospital at noon. Nobody called me. She then said she didn't call me back because my Dad said not to worry about it. At least she could have called and told me that.  Anyways, the doctor did call me shortly after I left. She was very apologetic to me and said those nurses were wrong. They can share the information with me..I'm his family...his ONLY family and that was ridiculous. I never had a problem before w/that...so I think that is why I was just angered at the whole situation.

Anyhow...my dad can't go home w/o 24/7 care. My brother and I can't provide that for him. They are suggesting a nursing home and were just devastated with that news. My dad is coherant enough to know what's going on and that would just break my heart (and his). We have SO many decisions to make. They are going to wean him down a bit on the steroid, because he is so angry and hopefully that is why. They also upped his seizure meds to see if that helps anything? I hope and pray his speech gets better. I know that is why he's so angry and he just wants to go home. But I can see major depression and a major "I Don't Care" attitude. And I can't blame him...

Thanks,

Jill

Jill, does your father own his own home? I'm not a financial expert, but if you cannot afford the home nursing care, one possibility to consider is a reverse mortgage on his home...i.e., where the bank pays him instead of vice versa, and the loan is repaid from the proceeds of the sale of the home after his death. Maybe that would make the home nursing care manageable?

For most seniors, their home is their biggest asset, and this is one way to retain ownership of it while still making use of its value. Some info, including pros/cons, here:

http://www.credit.com/life_stages/retirement/Making-Sense-of

I'm so sorry that you are dealing with this. My dad also has GBM and he is adamant about wanting to stay at home...he's even started trying to lose weight because he thinks it'll be easier to stay in his home if he isn't too heavy for my stepmother to lift. It just breaks my heart to know he's thinking ahead to when he might be helpless.

I wish you and your dad the best. 

Jill,  ok as a RN now I'm ticked off.  POA means something & they were wrong!  They should have seen to it that you were fully informed!!!  I hope that for them to say that your dad has aphasia was a medical diagnosis  from the doctor not their assumption!  And of course your dad probably did not want to talk about it - he's UPSET!!!  I'm really ticked!!  Nurses like that is what gives us a bad name - I apologize for their stupidity & lack of critical thinking skills.  I would be tempted to report them to the unit manager....obviously they need further training & I hope this does not happen to another poor soul!   Post-op my mom went to an in-patient rehab center for PT, OT, and speech therapy.  At 58 yrs old she had to re-learn how to tell time, sequence sentences, memory building and she has rt-sided hemiparesis (can't feel much but can walk - originally she could not walk).  She had to start at ground-zero & build back up basically.  She cannot function as an accountant but does well in my home on her own.  Can your dad benefit from such a rehab center?  We were told the sooner rehab starts the better!  :)

Nikki