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 Finding the right doctor 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
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I felt differently 2 years ago when my dad was living independently and could do all ADLs. Even a year ago when he was still living mostly independently. After the "big decline" last summer, it has changed my thinking about a lot of things about how medicine is practiced. Seeing how unhappy and undignified my dad's life has been for the past year, it really has had a big impact on my philosophy about medical practices.
Everyone has to make their own choices. I just know that at some point I will choose not to have certain tests, procedures, etc. that I have been having as a healthy person. Lynn


Sat Jun 19, 2010 8:19 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Mary,
I don't think they are giving up on him but sometimes the tests are hard on our loved ones, granted I don't actually agree with no blood tests but my Mom was in her early 90's no LBD and the Dr told her no more mamograms, I remember thinking the same thing you did but in all honesty if she did have a cancer would I want her to go through sugery and treatment and when I thought of it that way I knew the Dr was right!

Did you express your thoughts to the Dr.? He might think this is what you wanted! Just a thought!

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Irene Selak


Sat Jun 19, 2010 12:20 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post post subjec
Irene,
I didn't actually talk to the doctor about lab tests. This GP is usually very open to suggestions. Maybe one part of me is in agreement with him and I don't want to be. I do wonder about diabetes as it runs in LO's family and LO is losing so much weight. I could to satisfy myself do an occasional finger stick on him. (I could borrow my sisters glucose monitor).
My 96 year old aunt had lab tests done to the very end. Her doctor said it was unethical not to do these. Go figure.
Mary


Sat Jun 19, 2010 10:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
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Hi Mary - one person's ethical makeup is not necessarily another one's. And, our LOs are different ages and in different stages with their disease(s) so it is really very individual. I think the bottom line for me is, if my LO had a particular test and the outcome is not good, what would I want to do about it? Would I want my LO to go through surgery, radiation, chemo, etc.? My dad can barely handle going to the dining room in his wheelchair. Having to get on the handicapped bus, be transported to a dr. appt. is a HUGE and stressful thing for him. I can't even imagine what it would be like to take him to the hospital for MRIs and all the things his drs. would like him to have so they reach a more conclusive diagnosis. Say nothing about having invasive procedures done.
If you think through the consequences of having data from various types of tests, it may become much clearer to you what to do about add'l testing.
I was all for my dad having a hip replaced when he was 83, thinking it would really improve his quality of life and lessen his pain. But if he found out today that he has prostate or colon cancer, would we do anything about that? No. We are at a completely different place now, and life prolonging measures would be torture prolonging measures for him at this point.


Sat Jun 19, 2010 10:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Exactly, Lynn!

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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.


Sat Jun 19, 2010 11:30 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post post subject
Lynn
I couldn't agree with you more. I am a retired RN and many, many times I have seen elderly returning from surgery, picking in the air. I would fight against surgery for my LO with every thing I have to give, however a simple lab test to detect high chloresterol or elevated A1C, or anemia could give me information as to how to feed him etc. I would like to know if I'm giving him too many fats or not enough as he is losing weight. My LO is still able to be active. Friday at the senior center, we had a small band and being my LO likes to dance. We danced. I think its worth it to keep him going. Mostly his problems are more psych than physical. For instance, he still has some mild delusions and always waiting for someone to deliver something important. (I think its a drivers license) Even got up at night once to unlock the door but still other times doesn't want anyone coming in our house. Recently I had a meeting at our table, he was being fairly decent until one lady got up to get a drink of water. He jumped up and said "thats our water, we pay for it". One time a person we met reached out to shake his hand and LO said "are your hands clean?". How embarrising. In some ways this has always been his personalty except he was able to contain it and only verbalized these concerns to me. He was always so kind and polite to everyone.
I appreciate all your input and it helps me to examine myself to determine if I am worried about him or myself.
Thanks
Mary


Sun Jun 20, 2010 10:00 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Mary, I, too, am an RN, still licensed in WA & AZ but unable to work since 2005 because I'm taking care of my husband.

It's interesting that you should mention the post-op situation in the elderly, as there seems to be an association between anesthesia--at least specific types--and subsequent dementia in elderly patients. There was considerable discussion on another forum where it was noted that many, if not most, of the forum LOs affected with LBD had undergone a surgical procedure with a general anesthetic in the years just prior to their dx.

Regarding diet, most dementia care facilities feed their residents regular diets without much regard to cholesterol. They attempt to make the meals and snacks appetizing and high in calories because most residents walk a great deal and have a high caloric requirement. Keeping the weight on is a bigger challenge and more important goal than lowering their blood cholesterol level. Hope this helps. :)

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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.


Sun Jun 20, 2010 10:20 am
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Joined: Fri Jun 19, 2009 11:23 am
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Post post subject
Hi
I gave up my RN license in Wis when I hadn't done any work in 6 years. I figure off for 6 years things change so much, I would be lost. Now I find myself with the most important nursing job of my life. I am thankful for my nursing career as I think maybe LO's dementia was noticed sooner.
And speaking of dementia, after mild sedation, LO had a prostate bx in November of 2008 and Dec of 2009 I started to really notice problems of confusion. Especially at night. The problem just esculated to delusions and hallucinations by March of 2009. I have been wondering about that connection. Yes, I will avoid allowing him to have any more procedures that require sedation. Of course something like a hip fracture is another story. Hip fractures are like getting a death sentence anyhow. My stepmother was 97 when she fx her hip. One of the anesthesiologist that I worked with said, At that age, after hip fracture, the average life expectancy is 18 months. My stepmom lived 18 months after that. She was so confused with Alzheimers before surgery that we didn't notice any change in cognition after surgery. I guess pallative treatment only from now on. Thanks
Mary


Sun Jun 20, 2010 11:33 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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I agree, Mary. Our current 'jobs' are the most important of our lives. And I am so thankful I can manage my husband's Foley catheter myself and not have to rely on calling someone in the middle of the night.

I'm not sure why I renew my WA license every year [AZ allows me to put it on an 'inactive' status]. If my husband should have to go into a care facility I'll probably have to work to help pay for it. Yes, a lot of brushing up would be necessary, for sure. Especially keeping abreast of all the new medications.

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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.


Sun Jun 20, 2010 11:49 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post The Right Doctor
I want to share yesterday's Dr. appointment with the group. We saw our LBD specialist at the VA yesterday with a young resident there during the appointment. It was wonderful to see Dr. Leverenz training the new doctor on the symptoms of LBD. The resident isn't going to be a geriatric dementia specialist...he is going to go into internal medicine. But he has a basic knowledge now of the core features of LBD by seeing my LO through her fluctuations, shuffling and stooped posture, and hallucinations, all of which she demonstrated during the appointment.

The resident also saw an experienced dementia doctor communicate well with my LO. We discussed her experience with the disease in the past, the present, and the future. The last time this doctor saw my LO she was in rough shape, physically and mentally. Now, six months later with a minimal dose of exelon (1.5 mg in the am, 1.5 mg in the pm) her score on the mini-mental went from 11 to 21. The Dr. recognized the progress she has made while at the same time gently acknowledging that a LBD patient is often "aware" of their progressive disease and must continue to live with assisted care, which in my LO's case is humiliating to her. He told us that this will not change throughout her lifetime. He spoke truth to her in a way that she could understand.

I am so proud of my mother for her courage in fighting this disease and her willingness to talk about her struggles. I'm grateful for the right doctor and for the VA health care system that makes this care possible for us.


Sat Jun 26, 2010 9:25 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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AnnieN,
Thanks for sharing. Sounds like you have a great medical team.
Robin


Sat Jun 26, 2010 12:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
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Hi Annie - I'm glad things are going more smoothly now, and isn't it wonderful to have a dr. who "gets it" and can also pass that along to a colleague!
I hope this has made your life less stressful, and you can get time away to do the things you love more often.
Lynn


Sat Jun 26, 2010 7:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Glad to hear the Exelon is having a positive effect. My husband has been on it for 2.5 years and he had almost immediate results. Not sure if it is still doing anything---there's really no way to know where he'd be without it--but we're sticking with it for the time being. He's had no ill effects from it at all. It has caused possible hyper-acuity in his hearing, so he is very sensitive to noise, but that's not a problem as long as we keep things quiet.

Nice that you have access to good and caring doctors. Makes this whole Greek tragedy a little more bearable.

_________________
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 Jun 26, 2010 8:02 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post lab testing
Previously I had asked your opinions on doing routine lab testing. I felt that if the GP did not want to do any lab testing of any kind they were just "giving up" on my LO. I know he and I still have a lot of good days together. Different from before but good. This lab testing, or lack of, was bothering me.
Today was the appointment with the neurologist. I asked him for his opinion of doing routine lab testing. He pretty much agrees with the GP about not doing routine lab testing but if a problem came up such as increased confusion, agitation, agression etc, then he would recommend testing for things like infection. Things that can be managable. I'm feeling much better about the subject.
Thanks every one.
Mary

PS The neurologist thought LO was doing well and he said that Aricept and Namenda work better for LBD than for Alzheimers as far as hallucinations and delusions


Mon Jun 28, 2010 3:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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I'm glad you spoke with the neurologist about it, and he was able to explain his view in such a way that you are feeling good about the situation.


Mon Jun 28, 2010 4:37 pm
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