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 Finding the right doctor 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding the right doctor
It's not unusual, either. When my husband was in a SNF in AZ, he was being 'seen' by several physicians and a PA. I never saw any of them and I was there most of the day, every day for the three weeks he was there. And not one of them picked up on the fact that he was going into renal failure. I noticed the symptoms and finally got him transported to the hospital. Very little accountability, IMO. :x

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Aug 23, 2010 1:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Finding the right doctor
It's no wonder the costs of insurance are so high. There are probably some very good drs. out there who actually do see their patients in facilities and give them good care. But, these patients are easy targets for people who are unscrupulous. This particular dr. "sees" quite a few patients at the ALF and I bet he isn't there for very long when he visits.

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Aug 23, 2010 2:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Finding the right doctor
I thought we had all the issues around taking my dad off certain meds straightened out, but no, it couldn't be that simple, even after 5 months of asking the drs. to do what needed to be done to decrease his agitation level. The hospice dr. agreed to take him off certain meds, then the psychiatrist returned to the ALF last Mon., told the nurses to put my dad BACK on the very meds. we'd been asking him to be taken off of. He told the ALF director that if we insisted he go off these meds, then he would refuse to be the dr. anymore. I told the director "fine, then tell him he's fired." That was 6 days ago. I found out this morning that nothing has been changed and so my dad is now back on what he'd just been taken off of.
I finally had the energy to write the psychiatrist a letter yesterday telling him his services would no longer be needed, outlined why and all the times I've tried communicating with him. Sent copies to all the other drs. and the ALF director. Just talked with the head nurse at the ALF today and she confirmed that my dad's been put back on the things the hospice dr. took him off of.
Monday morning I will be calling my dad's attorney. Is this not hard enough to deal with without having to fight doctors to give him better care? If I didn't care about my dad I'd just drop it, but who's going to look out for him? I just want to cry but I don't have the energy to. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Aug 28, 2010 2:18 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding the right doctor
Wow, Lynn! How can you recover when pneumonia when having to deal with all of this???!!! I would ask the state to get involved in investigating some of the charges you mentioned for 'visits'. I suspect some are just feathering their nests and want to keep their hand in, as it were. Did you say you had already contacted the ombudsman?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Aug 28, 2010 3:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finding the right doctor
Sounds like you need a family care conference with the RN in charge at the ALF. Many states have long term care ombudsman. Find out from the ALF if there's one of that state. Call that person for help as well.


Sat Aug 28, 2010 4:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Finding the right doctor
The stress from the constant dealing with this is how I ended up with pneumonia in the first place! At least I'm getting a little energy back now.
I don't know ANYTHING about an ombudsman, but will check it out next week. Perhaps the hospice nurse or the ALF director might know something.
What I can't figure out is this - if the hospice dr. agreed to take my dad off the meds we'd been requesting for months, and he's under hospice care, how can this dr. come in and override what the hospice dr. said? I think he's in a p****ing contest at this point. I'm glad he threatened to quit on Mon. It's just the straw that I needed to fire him.
Talked with my sister this afternoon and we will have my dad's atty. get involved on Mon. Gonna cost us some bucks, but it will be worth our mental and physical health. She has pneumonia too......

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Aug 28, 2010 5:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Finding the right doctor
Oh, if I'd had the foresight last year and ignored my dad's wanting to stay in MD I wouldn't be fighting this constant medical care battle!
Yesterday afternoon I found out that there would be a meeting today with my dad's 2 CNPs, the hospice nurse, hospice social worker, and ombudsman (not sure who invited him), the ALF nurse and the ALF director. I said great, I'll be attending via telephone. I was told my sister would be there in person (turns out my sister didn't even know about the meeting and couldn't be there).
I patiently wait for the 10:30 call, don't get a call, I call them and am told they'll call back in a few minutes. I wait till 11:30, still no call so I call back, talk with the ALF director. She tells me the meeting is over, everyone's gone but she'll update me on what the meeting was about. My family has been so ignored, not listened to, not given any value by some of the people at that meeting that I went ballistic. This was the final straw. I tried to find out from the ALF director whose decision it was to exclude me and not invite my sister. That never was clear.
So, I called the primary care, the head CNP, because I had major suspicion that it was she who didn't want a family member present. I was sobbing by the time she got on the phone, explained what I was so upset about, asked her why I was left out of the meeting I'd just be invited to yesterday. I'll admit, I was a little angry and wasn't quite using my most diplomatic voice, but come on, how many times does the family have to be ignored without me finally blowing my top?
She said she would NOT change my dad's meds, he does NOT have anger issues, except that his family causes and anger and agitation he has. All blamed on me and my sister again. I reminded her of all the outward signs, like the split, bleeding openings on the backs of his hands, kicking the care givers, etc. etc. etc. She said nothing else could be done for him because of his neuro issues. I asked "what neuro issues do YOU think he has?" She said "LBD and some ALz." I said, "if you go to the LBDA web site, you will see a lot of discussion about some of the meds he's on and how they may have the opposite effect on LBD patients. Given that, why have you not tried changing his meds in the 5 months I've been asking that something be done to help him?" She got really huffy, talked about how I'd fired the psychiatrist last week, and she was going to keep him on all the meds the psychiatrist had him on. (including the ones the hospice dr. had recently taken him off of.) I said then her services were no longer needed either. Then she threatened to call her attorney and sue ME and my sister for putting my dad's life at risk! I told her she didn't need to bother suing me because I was firing her and that I already had my dad's attorney and my attorney working on a letter to her for not helping my dad and excluding the POAs in all decisions so far.
That made her back down, and then we were able to reasonably discuss his anger and agiation. Hallelujah, she FINALLY got it and agreed to decrease one of his meds and increase another as of tomorrow. I agreed to keep her on as primary for now, but told her he'd be moving to VT very shortly if he didn't get the help he needed to be less agitated.
In the meantime, I am looking at air ambulances, nursing homes, and his finances. His disease at this point is a lesser battle than what I've had to deal with with these health care providers on the ES of MD. It is a freaking nightmare!!!! And it doesn't seem to ever end.... :cry:
Just when I'm at my wit's end, there is another battle to fight for him. I can't wait to see what happens next.
Those of you with good health care for your LO really can't imagine how lucky you are. All you have to do is help your LO, not battle the drs. and nurses. I am envious. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Aug 31, 2010 2:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finding the right doctor
It sounds as if the facility believes the family doesn't have your father's best interests in mind??

I suggest you call the ombudsman.


Tue Aug 31, 2010 3:16 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Finding the right doctor
Lynn,
What a nightmare for you, what you are trying to do long distance is almost impossible, this facility knows you are at a distance and that is why they planned their meeting and giving you short notice was their way out knowing you wouldn't be able to attend, I am sure this isn't the end of it for you as I am sure you are well aware of !

How are you feeling now with the anitbotics, I do hope better as all this is not helping your health situation either!

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Irene Selak


Tue Aug 31, 2010 3:21 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding the right doctor
Oh, Lynn! I was so hoping this conference would work out. Yes, you do need to speak with the ombudsman. It sounds like he/she is only hearing their side of things and his/her job is to represent the patient and family's concerns.

So much for your having a restful recuperative day! :cry:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Aug 31, 2010 3:32 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Finding the right doctor
I seldom suggest this, but if I were you, I would find a facility in your area that will take him and I would move him ASAP. Unfortunately, facilities talk to each other and you may have a hard time finding one that will accept him in your area. These places play their own particular form of hard ball and it sounds as if you are the target.


Tue Aug 31, 2010 4:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Finding the right doctor
The ALF director is very good, and she was the one who invited me. She wanted me at the meeting by phone, but said that others "wanted to meet first without the family" so she was waiting at their request. She said she felt like she was at one side of the table trying to represent me and my dad and that everyone else just bowed down to the CNP who refused to make any changes at the time. She said she'd never been at a meeting that was so uncomfortable.
The CNP seems to rule - I think her ego is that of an egotistical dr., she just doesn't have the MD degree. However, my sister has also left very nasty messages on her phone, and I think I'm getting the brunt of my sister's abrasive communication style. The CNP did agree to change 2 meds by Wed. so we'll see if that gets done.
If not, my dad's lawyer is up to speed on what's going on. I just got off the phone with him and told him the CNP said she was going to sue me for putting my dad's life in danger. He laughed - how stupid was what she said? I was really glad that I had talked to my own atty and my dad's in the last week about how I have been unable to get him the medical care he needs and deserves. She backed down so fast when I told her I'd been in contact with 2 attorneys. My dad's atty said to wait 2 days to see if the meds are changed, and if they aren't, then he'll get involved.
Here are the big reasons for NOT moving my dad - it will be very disruptive for him, it will be very expensive for the transportation, and it will increase his monthly expenses by about 40%. He will be paying that much more to NOT have his own room, his own furniture, and not be in the ambiance of an ALF, he will have to be in a NH.
That said, it will probably make my life easier in some ways to have him here where we have great medical care and a ton of programs for elderly disabled people. But, if he lives for a few more years, he'll be out of money. This is a big issue for many of us.
My poor husband was at my side, through my various tearful phone calls to several of the people who were at the meeting this morning. It really upsets him to see what I've been dealing with, and continue to deal with. I said "honey, this should give you some idea that if YOU need better care some time, I'll be there fighting for you just like I am my dad."
The ombudsman has never returned my phone call.
In the meantime, the pharmacy never got the prescription from the dr. today so I have to go back to pick it up. I was too emotionally and physcially exhausted to sit there with all the other sick people this afternoon.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Aug 31, 2010 4:58 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Finding the right doctor
I am so sorry, Lynn. You have very good reasons for not moving him. As long as you feel you have one ally there you can probably make it work. But don't lose your own health. The stress is just overwhelming for you, evident even from afar. I look for your posts wanting to hear how you are doing and how the situation is unfolding. It is like a scary story that if you saw it in a movie you would say, "Oh, that's just Hollywood. That wouldn't happen in real life." Except this IS your real life. It's a wake-up call for all of us.


Tue Aug 31, 2010 5:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Finding the right doctor
Well said, Nan, and thanks for caring. Next week when I'm in Wyoming I hope to get away from it all mentally, and hope my dad's care is under control and no one has to call me.
The hospice people are fine working with my sister, so that is one responsibility I am asking my sister to keep doing - talking with them every week and updating me with anything new.
I just talked with my sister about the outrageous thing she said to my dad 2 weeks ago that is the talk of the ALF. She didn't deny what I'd repeated, so I'm pretty sure she said what I was told she'd said. She suggested not going to see him for a few weeks and I said I thought that was a good idea for a while. That will also give people a chance to see that she is not the cause of ALL of his anger either.
Tomorrow I'm going to sit at the beach with a good book and leave my cell phone home. I need a break from everything! Hopefully the sun will help burn out some of those pneumonia germs!
I appreciate all your responses, really. Don't know how I'd make it without such good forum buddies. We do need to have a get together when our CGing days are over. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Aug 31, 2010 5:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finding the right doctor
I encourage you to put as much of this in writing as possible -- to the ALF director, to the CNP, to the ombudsman.


Tue Aug 31, 2010 7:15 pm
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