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 Finding the right doctor 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Finding the right doctor
Thanks, Robin, I have documented it. I am not sure what this ombudsman is going to be able to do for us, but hopefully he will get back to me tomorrow.
My husband thinks I should fire the CNP too, as in May she was fine with d/cing certain meds, but she was obviously upset about my telling the psyc. that his services were no longer needed. She said "I am continuing all the meds that 'Dr. X', whom you fired last week, has prescribed. I will not change anything." That's when I said, "then we'll be finding a new primary for my dad because what he's on does not appear to be helping him." Funny how she agreed to take him off those meds a few months ago but I think she is very spiteful at my dad's expense. That's the point where she threatened to "call an atty. and sue you for endangering your dad's life."
How does stepping down Namenda and Aricept endanger my dad's life?
I think she will eventually be sorry for saying this, because like so many of you have advised me to do before things got this bad, that state's nursing board is going to hear from us eventually. She also sounded like she'd get an atty. to keep me from moving him to VT.
BTW, just went to the pharmacy to get more antibiotics, and even my pharmacist remarked on how sick I've been this year. When I gave him the Cliff Notes version of what I've been dealing with, he said "no wonder your immune system is so compromised." :cry:

_________________
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 7:51 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
Isn't the CNP tied to the care facility? Isn't this person in charge of the care that all residents there receive?


Tue Aug 31, 2010 10:14 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Finding the right doctor
No, the CNP owns a "Family Care" business and everyone there is a CNP or office worker from what I can tell. When I called the family care place and asked for the dr. in charge a few weeks ago, I was told that there is no dr. in charge, that the head person is the CNP. They only use one particular dr. as a consultant and the billing comes out like he's the primary.
There is an RN at the ALF - she is one of the people who denies that my dad has any agitation issues, but if he does, it's only when his family is there. (which is complete BS) I don't know why she has this unrealistic view of my dad, but probably because she sees him a couple of minutes every few days. I've suggested that the people who continue to think this isn't an issue for him spend 1/2 day with him every day for a week. And, to observe when he splits his hands open, both of which are dripping blood most of the time. BTW, this has NEVER happened when I'm there and has only happened once when my sister was there. This is always discounted like it's a special event. His hands have looked like hamburger since he moved there a year ago.
There was a wonderful nurse there who recently quit. She only had an LPN, so this RN became her supervisor and they butted heads. The one who quit was fabulous with my dad, called me whenever a change was made that she thought the family should know about. She's gone unfortunately for my dad and me.

_________________
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 10:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Finding the right doctor
Just came back from an appt. with 2 clinical social workers at the Memory Center. Like so many of you, they advised me to get my dad out of where he is and move him to my state ASAP. One of them, who has been doing this for about 25 years said she'd never heard a worse horror story in trying to get decent medical care for a LO.
Also, talked with the ombudsman today. He was asked to attend yesterday's meeting by the CNP, and had been misinformed on a number of issues by her. I was glad to speak to him and get across my point that I am working as hard as I can to help my dad but have had resistance or no help from some of his care providers. I also told him about the threat to sue me by the CNP yesterday, whom he seems to admire. He was not happy that I had fired the psychiatrist last week, but I told him I would never have had to do that if the man was giving my dad good care and keeping the family involved in what was going on. He wants me to agree to "rehire" the psyc. I asked him why he though I should subject my dad to someone who was not doing him any good. It was a somewhat frustrating discussion, but at least he knows that my dad's best interest is my top priority.
I have also been advised that I should get legal guardianship of my dad. Anyone had to do this and can you give me any pointers that would be helpful? 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.


Wed Sep 01, 2010 12:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding the right doctor
Lynn, if your dad had previously appointed you medical POA I don't think it should be necessary to obtain guardianship. This is necessary after the fact, e.g., if the person is not competent to appoint a POA and there is none. At least, this is what I understand.

I agree you need to get him out of there, too. ASAP!

_________________
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.


Wed Sep 01, 2010 12:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Finding the right doctor
The CNPs and drs. there do not recognize legally made POAs. They could not care less if I am primary POA. That is completely meaningless to them and one of them remarked at yesterday's meeting that they "do not listen to input from family members." That was the main reason one of the people at the meeting told me how uncomfortable the meeting was and told me that quote.
So, not only do these people think they're God when it comes to medicine, but I guess when it comes to the legal system they also think they can do, say or get away with anything. It just makes me crazy.

_________________
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.


Wed Sep 01, 2010 2:36 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding the right doctor
Lynn, you're probably going to need an attorney to at least advise you. Preferably, someone specializing in elder law. Sounds like you might need one. :-(

These people sound like they are from Mars or something. OTOH, I have run across facilities that are very deceptive and underhanded. I almost put my husband in one--it was a very elegant ALF with all kinds of amenities that sounded great on the surface but--oh, the fine print! It is part of a chain and I wonder if they spend more on advertising and public relations than they do on care for their residents. But maybe I'm too cynical. The place he finally did go into for a few months was a really good one--a twenty-bed dementia care unit in a larger facility--where the staff really knew how to deal with the residents in a positive and effective way. I was impressed. I hope you can find a good place in VT for your dad!

_________________
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.


Wed Sep 01, 2010 3:10 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 do not understand why the CNP has so much power at the facility and so much power over your father's care. His care plan should be determined between the family (whomever has healthcare POA) and the care facility people.

Gaining conservatorship of someone takes some money (about $20K in our state) and time.

Sounds like you and your siblings need to sit down with an elder law attorney ASAP. If the attorney you have is not one, you can find one at naela.org. They can advise if you need to work with an attorney in the state where your father is, or an attorney in your home state.


Wed Sep 01, 2010 3:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Finding the right doctor
Excellent questions and observations, Robin. Why does this CNP have so much power? Maybe the ALF is just glad to have someone who is 5 min. away and doesn't mind coming over there a lot. I don't know, but I do know that hospice will not stand up to her and I have been told in no uncertain terms that the CNP's orders outweigh the hospice nurse and hospice doctor. I specifically asked that yesterday of the ALF director after the meeting.
My dad's attorney is up to date with what's going on. My atty. in VT hasn't been contacted this week, but he's aware of the problems. His daughter is an elder care law professor somewhere, I think Harvard, and although he isn't a specialist in elder law, he sounds pretty knowledgeable when I've talked with him before about my dad and our own estate planning. I know there are such attys. here so I can find one if need be. I had no idea that conservatorship would cost that kind of money.
Thanks for all your comments and info.

_________________
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.


Wed Sep 01, 2010 4:23 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
My assumption continues to be that others are exerting control over your father because they do not believe the family is properly managing his care. Sounds like the ombudsman is on board with what others are doing.

A starting point moving forward may be to have your father's attorney speak with the ombudsman.

Where ever your father lives, you may want to hire a geriatric care manager (preferably an RN) who can be a buffer between the facility and the family. You can find one at caremanager.org.


Wed Sep 01, 2010 5:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Finding the right doctor
Tried to get a care manager last year, none available within 100 miles.
I'll call my dad's atty and ask him to meet/talk with the ombudsman. Thanks for the idea.
I realized in my conversation with this ombudsman today that I had met him a couple of years ago. I asked him for help because I was so concerned about my dad living alone, far away, falling and not eating right. I told this guy that I really wanted my dad to move to asst'd living because I thought he'd be happier surrounded by nice people, in a nice place, he would be eating better and he'd be safer in case he fell.
The man nearly got apopletic and yelled at me "I will NEVER support children trying to get rid of their parents by locking them away in a nursing home and forgetting about them. I will fight for your dad and anyone else who tries to put old people away." I explained that the ALF was a VERY nice place and that my dad had many friends who'd moved there, and I was just concerned about his safety and happiness. I left feeling really awful and wondering how he was helping anyone. That was at least 2 years ago.
This man is prickly, to say the least. Opinion supported by the ALF dir. as well.

_________________
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.


Wed Sep 01, 2010 10:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding the right doctor
Gosh, Lynn, that's unbelievable! But, then, so is most everything that goes on there. Is it somewhere in The Twilight Zone?

_________________
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.


Wed Sep 01, 2010 10:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Finding the right doctor
Apparently it IS the twilight zone. I guess luckily for me I escaped when I went away to college and eventually moved to New England. Things are very provincial there - it's kinda like life about 50 or more years ago. Some of that is a good thing. Some of it, like the cultural attitudes about drs. and health care are not helpful to family members who want to be informed and involved. I do have a really nice letter from my dad's neurologist where he is now. He actually appreciated the fact that I do a lot of reading about LBD and all the other things my dad has received as possible diagnoses. I am hoping that if they need a specialist they will use him since the psych. is no longer in the picture.
My dad's primary care in the town he lived in for 60 years, was a good doctor and really nice guy. I wish my dad could still have him as his dr. but he's too far away now. If we could still have had Dr. F., we wouldn't be dealing with things like they are now. He even gets along with my sister! LOL!

_________________
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.


Thu Sep 02, 2010 9:50 am
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