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 remember three things should be eliminated 
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post remember three things should be eliminated
My mom lived 250 miles away on her own, so I didnt see her on a daily or weekly basis. I went up every few month and would clean up because she was a hoarder and could never keep a cleaning person beyond two visits. I started thinking around the beginning of '09 that she might have Alzheimer's.

So, I make an appt with her primary care doctor and take time off work for this. He gives her the remember three things. It was also obvious that she wasn't healthy, but he just said everything was fine and sent us on our way. While I had my doubts, I really thought that this man, a doctor and all had to be right.

In May '09 I had mom down to spend a week with me and I was terrified of sending her home, but she wouldn't even agree to have someone come in to help. She would just ignore when I tried to talk to her. My mom used to talk for an hour every time I had her on the phone. Our calls became daily and after 5 or 10 mins she wanted to get off the phone. Thinking back, that should have been a huge red flag had I known what I know today. I figured she was just getting old and it was sort of a relief because hour long calls nearly every day were eating into my own life.

She is a diabetic and I took her in to a doctor here because of a spot on her foot. He said everything was fine, but her legs and ankles were so swollen it looked like she had elephantitis. It isn't related to the LBD, but just general health.

In July she fell and was on the floor for 22 hours. I called her everyday. She sometimes would not realize I had called so I didn't always talk to her every day. I became frantic though and called 911. It turned out that she had a severe UTI and because she had been on the floor so long, the muscle was damaged. Fortunately she didn't break anything. She did have to spend a week in the hospital there and during this time I asked doctors and nurses about whether she had Alzheimer's. I just kept getting told that she didn't.

A month in the skilled nursing facility and I ask does my mom have Alzheimer's? I got referred to a neurologist, primarily for her neuropathy, but also because she had a few TIA's. What do we get? Remember three things. He tells me that all things considered, my mom is actually in really good condition and refers me to a primary physician.

Her primary is a very good doctor. However, I have raised concerns about her mental faculties in


Sat Aug 28, 2010 11:44 am
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post Re: remember three things should be eliminated
and what do I get? Aricept. Another visit, exelon patch. But all he says is we don't know if these work because they slow down dementia, not improve it. In the second half of '09 I had her in for 4 UTI's and all 4 times it came back positive. Her symptoms were not thinking as clearly, memory failing and tired. I got those symptoms several more times this year, but no UTI and no other explanation.

He did the remember 3 things again in May and should could only rememeber 1, but he left it at that. It wasn't until at my wits end that I did a google search for what kind of tests she might need that we ended up at UCI Medical Center's MIND clinic.

So, this is a year and half of doctors just acting like it's normal aging of the brain, despite the fact that I am telling them changes are very sudden and I'm very concerned. I had my doubts but thought that they must know. Now I'm angry, frustrated and full of guilt that I didnt follow my doubts to this trail sooner. My mom could have started treatment so much sooner.

I thought that the doctors knew. Yes, as I've said over and over, I had my doubts, but I really thought that they would know if something was seriously wrong. Now that I know about LBD, it is so obvious to me that she had a serious problem. I cannot understand how so many doctors have seen her and listened to my concerns about this and left it that. I trusted them because they were doctors.

I am so overwhelmed with guilt that I didn't get here sooner. I didn't know. I mean knew soemthing was wrong, but I thought


Sat Aug 28, 2010 11:59 am
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Joined: Thu Aug 26, 2010 7:11 pm
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Post Re: remember three things should be eliminated
All the signs were there, if you knew what those signs meant. I can't understand why so many doctors had the signs communicated to them and didn't interpret them correctly. This whole time I thought everything was related to her physical health because I kept being told that she didn't have Alzheimer's. I was so ignorant. I thought all there was Alzheimer's and if you didn't have that, then it was just because of age. Physically, mom kept getting healthier and healthier.

I'm so wracked with guilt that I didn't insist further earlier on. In May her doctor ordered another blood panel, but everything checked out normal. In fact, all the numbers were very good. That's when I felt I had hit a wall. I KNOW something is wrong, just KNOW it and I don't care if you are a doctor or not, but I'm going to get some answers. Why did it take a year and a half to get to a diagnosis and all this time she could have been getting treatment.


Sat Aug 28, 2010 12:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: remember three things should be eliminated
A study of 1K LBD caregivers has shown that there is "caregiver burden" associated with getting the LBD diagnosis established. So you are not alone. I can't easily find the statistic but I think the average time to get an LBD diagnosis is three or four years. Over half have seen more than 10 MDs on the way to the diagnosis! Compared to that, you are far ahead of the game. I know it's hard but try to let go of the guilt associated with this. You did the best you could. And, in fact, it was much better than the rest of us.


Sat Aug 28, 2010 12:40 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: remember three things should be eliminated
I'll also point out that the diagnostic accuracy of DLB is very low -- something like 32% for "pure DLB" and 23% for mixed DLB/AD. The diagnosis cannot be confirmed until a post-mortem brain analysis is done. I don't know if this is something you can discuss with your mother, or if you feel comfortable making the decision yourself. Actually, your mother's knowledge/consent is not required.


Sat Aug 28, 2010 12:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: remember three things should be eliminated
I can so relate to dealing with drs. who don't seem to either know anything about LBD or don't have a clue how to treat the symptoms. And, if you've done a lot of research and ask intelligent questions, some drs. are delighted to have an informed family member they can discuss treatment with, and other doctors are so insecure that you might actually know a few things about the disease they don't give your LO good care.
Don't beat yourself up about this - you are doing the best you can do. I am doing the best I can do, but that doesn't mean that all of the people in the medical profession are doing the best THEY can do. Some do, some appear to just be in it to make a buck and then retire. Unfortunately I am dealing with one of those right now and he is a big pain in my backside, to say the least. I am having to get my dad's attorney involved on Monday.
Don't give up - your LO needs your help and it will take a lot of work. But, at the end of this you can be at peace knowing you did everything you possibly could to help. Hang in there. Your mom really needs you to stay strong and keep fighting for her. 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.


Sat Aug 28, 2010 2:26 pm
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post Re: remember three things should be eliminated
It's not even so much that they didn't know anything about LBD, it's more that they didn't seem to know dementia at all. It was being sloughed off as she's just getting old. What's so shocking to me is when I read the symptoms of LBD, it's like, man, it was black and white. I got her vision checked because seeing the animals all the time, I asked her doctor about the constant runny nose. So many little things that if you knew what LBD was, it would be obvious.

Her primary care doctor is actually a very good doctor. He spends a lot of time with us and is very thorough. I'm constantly getting her tests and screenings. I just don't think he really understood dementia.

While I understand that until the end, we won't know for sure it is LBD, I am fortunate that our exam was done by UCI Medical Center's MIND clinic, which is renowned for their work in the area of abnormal aging of the brain. I'm also fortunate that while my mom has few financial resources, she has amazing insurance and we live in a community with numerous doctors, many of whome are excellent. I'm fully confident that UCI is going to direct us to the best.

Still, I'm scared to death. My worst fear was Alzheimer's only because I didn't know it had evil cousins that would put us through a similar hell. There was one promise I made to mom and that was that I would never put her in a nursing home. With this diagnosis I don't know if I'll be able to keep that promise. I work full time. Fortunately, I work from home so taking care of her this past year hasn't been that hard. We don't have any children ourselves, so it's not like I'm deprived of an 8 hour's night sleep on a regular basis.

Things actually aren't so bad right now so we have time to enjoy being together. This is going to


Sat Aug 28, 2010 3:11 pm
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post Re: remember three things should be eliminated
RE donating the brain. I will have this conversation with my mom and I expect her wish will be to do so. I just want to wait until have a our conference on Monday.

I do want to thank you all for your responses and all the posts that are here to help me understand it more and prepare myself with the tools you all have shared. I don't think I've been very gracious with my entry. I'm just a little overwhelmed right now, but do know that I feel for all of you who are caring for or have a LO with this awful disease. Many of the posts I've read over the last 36 hours have brought tears to my eyes. I'm so sorry.


Sat Aug 28, 2010 3:29 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: remember three things should be eliminated
If you do need to put your mom in a facility one day, just remember, most of us never thought we'd be putting our parents in an ALF or NH. Fortunately for those older people who had the foresight and money to go into continual care, their children have not had to deal with this. But, those folks are not in the majority, which leaves probably millions of us to deal with aging, sickly parents.
All of us would rather spend our remaining days in our own homes, but that is just not always possible. If she no longer is mobile, cannot use the bathroom or give herself a proper bath or shower, and develops many other physical issues, you will have to either get some help to come in or think about placement. There is no way most of us are capable of lifting the "dead weight" of a person who falls on the floor or who cannot even hold their own weight when stood up, and some of our LOs are at that stage. Remind yourself that feeling guilty is not going to be good for your OR your mom. You will do what is in both your best interests when the time comes. Keep strong. 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.


Sat Aug 28, 2010 3:33 pm
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Joined: Thu Aug 26, 2010 7:11 pm
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Post Re: remember three things should be eliminated
My mom doesn't seem to have many of the Parkinson disease symptoms other than sometimes having the soft and hoarse voice, a slight stoop and moves slower. But, aren't those also possibly just because she's older? Mom is 83.


Sat Aug 28, 2010 3:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: remember three things should be eliminated
Those are certainly parkinsonism symptoms. Whether, in your mother, these symptoms are caused by parkinsonism is a different question.

Personally, I would never expect a primary care physician to know anything about dementia or even that symptoms are dementia-related. Indeed, the symptoms you have mentioned in this particular post could be caused by several neurodegenerative disorders, not LBD alone.


Sat Aug 28, 2010 4:46 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: remember three things should be eliminated
Sounds like you need some respite for yourself. Perhaps you can place your mom in a care facility for 2 weeks so you can lighten your load for a short time?


Sat Aug 28, 2010 4:51 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: remember three things should be eliminated
Dear stepping_up,

I think there are some diagnoses that some doctors don't want to speak out loud - especially primary care doctors. My mother's primary is a wonderful and caring doctor, but it was an occupational therapist who first mentioned dementia to us. My own primary had trouble at one point saying something important to me, too. She got creative and left me alone in her office with my medical record that had the words "morbidly obese" clearly visible. It worked, too.

Primary care physicians are generalists. They can't know everything about everything. They know a little bit about as much as they can. Most of us agree with that, but if what they don't know about is a disease or condition we are dealing with, we want to hold them accountable. Can you imagine what a physician who could accurately diagnose and treat everything would be like. Probably insufferable. That's why they do need us to be advocates, helping with research and pushing them for accurate results. It's not disrespectful. It's helping them to do the best job they can.

And all doctors, primary or specialists, are humans influenced by the forces in their lives. They have good days and bad days. And in this world of "managed care," they are under pressure to see as many patients as possible in a given day. Less time for research and less time with each patient. It's sad that things have come to this state, but there it is. I suspect that most doctors wish they had the time to be more thorough with their patients.

That said, you're probably better off dealing with the UCI clinic for the dementia. Where both education and research is taking place is probably the best place to find the most thorough answers. My mother's specialist, who I took her to without a referral and without telling Mom's primary, is at the U of Mn. I work at the U, so was aware of both this clinic and the neurological and memory research that is taking place there. So this wasn't such a bold step for me.
But Mom's primary is in constant consultation, now, with the memory specialist and is learning a great deal about LBD. I've also provided her with some of my research.

You might want to direct your Mom's doctor to the LBDA home page. Under the "Professionals" tab is a large collection of materials from research articles to single page summaries. You'll find a wealth of information.

And keep researching - for two reasons. One is that the doctor is never going to have enough time to thoroughly research LBD, any more than there will be time for him to research the diseases plaguing his other patients. If he doesn't direct you to a specialist, it's probably because he's not sure where to direct you. Asking the UCI clinic to copy the primary with their notes is the first step toward getting him to start learning about the disease. With the notes, it's probable that he will call UCI for information and understand a lot more of what you are going through.

The other reason is something that I, at least, have found helpful. It seems that the more I learn about LBD, the better able I am to help my mom through it. No, I'll never be an expert. But I can keep trying.

Please go gently with the doctors and help them learn the things that will help your Mom. They'll never have the time to thoroughly research LBD anymore than they will have time to learn about my degenerative discs or the neuropathy that your mother and I both have. At least not unless they are specialists, preferably involved with an educational and/or research institution. Medicine is not a science with black and white tools for diagnosis. It's an art in which the doctors use whatever they have to try to help their patients. These artists use science, but they use a lot of other resources, too, like experience and intuition. They need our help as much as we need theirs.

You've got a great resource at UCI. You'll find yourself relying on them a lot.

Best wishes to you and your mother.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Sat Aug 28, 2010 11:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: remember three things should be eliminated
"That's why they do need us to be advocates, helping with research and pushing them for accurate results. It's not disrespectful. It's helping them to do the best job they can."
So well said, Kate, and oh, do I wish my all of my dad's providers embraced this philosophy. 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.


Sun Aug 29, 2010 8:28 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: remember three things should be eliminated
I am helping the LBDA with the awareness program by distributing their info packets to area health care professionals. So far the response has been the same: "I've heard of this, but don't know much about it." You can register to help during the campaign and receive packets to distribute in your area.

_________________
Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sun Aug 29, 2010 10:32 am
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