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 Finding the right doctor 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
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Mary - that's great that his dr. could put you more at ease about difficult situations like routine tests. Wishing you all the best, Lynn


Mon Jun 28, 2010 5:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Finding the right doctor
I am so frustrated today about dealing with my dad's psychiatrist and his CNP!!! Maybe it would be worth the $12,000 to have my dad brought here by ambulance and the extra $3,000 a month for him to be in a nursing home instead of an ALF. I wish I had gone against his wishes last year and driven him to Vermont and insisted he live in an ALF here. I'm just about to quit all contact with all his medical folks, but there he is, helpless. Spending 5 months trying to get certain meds changed should be more than enough time. I am at my wit's end.

_________________
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.


Fri Aug 20, 2010 8:51 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Finding the right doctor
Lynn, I've been wondering. If the money were not an issue, would you move your Dad to where you are? Weighing the pros and cons with the money out of the picture, where would he live?

On our end, we're doing well here. My LO has really improved on the exelon. We went to an interview for a special support group today sponsored by the Alz. Society and she totally blew them away. She was witty, intelligent, centered, remembering things, etc. She still had the physical problems...apraxia, visual processing, parkinson's symptoms, but at specific times during the day it is like she is her old self. She was invited into the support group and will be among other dementia patients learning and talking about their conditions. She has been looking for something like this for years. I think this will be a great experience for her and for the group. For me, too. She already had the facilitator tell her straight out something that I haven't had the courage to say...she's nosy and listens to other people's conversations!

We still put an inordinate amount of time into her care and this morning I got up at 3:30 am to get to work so that I could get my work done by noon. But this is doable and it is worth it.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Fri Aug 20, 2010 10:08 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding the right doctor
Annie, how exciting! I'm thrilled for your mother and for you!

_________________
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.


Fri Aug 20, 2010 11:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Finding the right doctor
Good questions, Annie. I keep asking myself the same thing and keep going over all the pros and cons. I guess if I thought he had several more years to live I'd probably move him here. Since he is now in hospice, presumably he doesn't have that much longer, so do I want to totally disrupt his life (such as it is) and move him or let him spend his remaining days in a place he has slightly gotten used to? Do I want to take on all responsibility for him, with zero help from his best friend and my sister? Granted, I'm still the one doing the most, but I'd be doing everything. My husband and son could help out, but my husband and I would never be able to travel like we just started doing when I retired 2 yrs. ago. We are planning our fall trip around being near a large airport each day so we can fly back if my dad's situation becomes critical, and never being out of cell phone reach, which has eliminated our ability to go to some places that we want to go to. Trying to balance what is best for everyone is so tough. There are no easy answers, that's for sure. It would be good for my dad and my son to see each other more often, but I can't expect my son to go to college, work, and be the primary person in charge of my dad while we're gone several months during the school year. I think my dad would have better care here from the med. community, but it would take a while to get everything done and get him settled in here. There are just so many issues to try to balance and figure out what is best for all of us.
Annie - your mom's situation is remarkable! What a great thing for all of you that getting her meds balanced has made such a positive impact for her and all of you. That is just amazing and I'm so happy for all of you.

_________________
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 21, 2010 8:14 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Finding the right doctor
Lynn, you have a lot more things than the money to consider in your family's situation, that's for sure. I've been told by people that I trust and respect that my LO has experienced a wonderful life and it is now my turn. I'm reading a classic right now, "On Death and Dying" and last night I read this, "Whether the generations have lived together or separately, each generation has a need and a right to live their own lives, to have their own privacy, their own needs fulfilled appropriate to their generation." What was true forty years ago when this book was written is still true. You and your husband have a right to enjoy your retirement. Your son has a right to start his adult life off like the other young people of his generation...it is an exciting, challenging time for him.
It is obvious to me that you are doing the best that you can for your Dad, all things considered.

On a personal note, we had a real Lewy Day yesterday. I think it was a bounce-back from my LO's pulling it all together the previous day. Oh well, fluctuating cognition, you know?

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Annie, daughter of brave Marie, dx 2007 and in ALF


Sun Aug 22, 2010 8:20 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Finding the right doctor
Annie,
On the bounce-back note: We too have days when my husband can "pull it together" but it seems as if the challenge of it takes days for him to recuperate. Our daughter was married in March and Ken not only wore the tux and walked her down the aisle but was able to acknowledge numerous greetings from people he hadn't seen in ages and make it through the entire event. The very next day he had no idea why we woke up at a hotel and didn't seem to recall a bit of the day before, had a very confused few days following the wedding. I'll take it when I can get it, though! Your mom sounds like a hoot. My mom, who has AD, has finally stopped being so nosy and lets others mind their own affairs, lol. One day at a time.......Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sun Aug 22, 2010 9:14 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding the right doctor
Sher, what a wonderful blessing that your husband was able to participate in your daughter's wedding.

_________________
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.


Sun Aug 22, 2010 9:18 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Finding the right doctor
Yes, Pat! We were all amazed and so thankful and relieved, as you well know it could have gone completely differently. BTW, I am very curious: what does mockturtle mean/stand for? Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sun Aug 22, 2010 9:24 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding the right doctor
I guess I'm kind of a Lewis Carroll fan, you know, [i]Alice in Wonderland[i] where the 'mock turtle' was one of the characters. It's a satire on the fact that they ate 'mock turtle soup' in those days and he thought of having a 'mock turtle', I guess. In my case, I [used to ] love to RV and having my home 'on my back', so to speak, led me to pick the screen name.

_________________
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.


Sun Aug 22, 2010 11:15 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Finding the right doctor
This morning I have had to fire my dad's psychiatrist. I've tried since April to get him to change or increase certain meds to reduce my dad's anger/aggitation level. He ignores me, and won't listen to any questions or suggestions from the ALF director who's had a lot of experience with LBD patients. He gets huffy with her, doesn't want to hear about her experience with LBD patients and certain meds, and won't answer my calls or letters to discuss this. Yet, he gets paid $335 a month to "see" my dad. He even told me last month when I saw him at the ALF that he didn't know my dad was having anger issues and that he hadn't seen him in a long time. Last week I got an ins. statement for all the monthly "visits" to my dad at $335 each. What a fraud!

_________________
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 10:57 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Finding the right doctor
Turn him in to Medicare. Nan


Mon Aug 23, 2010 12:58 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
Lynn -
I'd also suggest you put it in writing that you are firing him and supply a copy to the ALF.
Robin


Mon Aug 23, 2010 1:07 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Finding the right doctor
Thanks Nan. I've gotten that advice from several knowledgeable people. If he knew something about LBD, and at least looked at the meds, tried something new or changed what my dad is on that would be another story. But my dad has had these issues ever since going on Namenda and Aricept, and it turns out he is on Ativan. I'm not a med. professional, but I certainly read a lot about meds and LBD and he is unwilling to change anything despite the fact that my dad's anger is getting worse.
One of these days when I have the energy to deal with this I will. For now, just figuring out how to get my dad better care and investigating moving him near me is enough to deal with! I'm just imagining how many of these folks he's billing at $335/mo. and not doing anything for. Great way to "feather your nest" isn't it?

_________________
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 1:09 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Finding the right doctor
Good idea, Robin. I will write him a letter and outline why we don't need his services anymore. I sure wish these drs. and CNPs would work as a team with the family and ALF. It would certainly help my dad and help me too. I feel like I'm in battles a good part of the time and that is not the way I like to live. My attorney told me I should have him send a letter to my dad's drs. telling them they need to communicate with the family and honor the POA. I'll wait a few days before considering doing that, since the firing might have gotten us somewhere.

_________________
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 1:13 pm
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