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Old 06-25-2012, 01:39 PM   #1
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Be Careful What You Ask For!

Being the proactive type, of course I got on the phone to see if that October appointment with the ATYPICAL/FTL/HEAD INJURY dementia neurologist in the nearby big city could bump our appointment up any, given that my Mom is 93 and not in the greatest health. I'm in luck, I was told; there's a cancellation for this week! Great, I tell them! But then start thinking... There's also a HEAT ADVISORY for this week (100 and humid); we'll have to take the handicap bus at $1/mile ($60 total); I'll have to come up with some means of getting her wheelchair out of the house (either rent a ramp or build something; driver can't help there); she'll be miserable and hate it the whole time; she might have an "accident"; etc.

At this point, she doesn't even HAVE a neurologist (the last one quit taking my calls when she failed to show the second time), and this one would be an ace in the hole; he is THE resident expert in what I believe to be her unusual non-Alzheimer's type of dementia and, as was demonstrated, people wait months for appointments. He will no doubt have to order a PET or SPECT (another trip to the big city) to verify the diagnosis, and Mom will hate every minute of it! Now I wonder...

How important is it to go to what will be considerable trouble and discomfort? I've even considered asking if I could just go in her stead for a "consultation"; that would be of SOME help...

Last edited by all4mom; 06-25-2012 at 01:41 PM.

 
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Old 06-25-2012, 01:49 PM   #2
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Re: Be Careful What You Ask For!

All4Mom, I know you want this appt. badly so the first reaction to me is you certainly should go with Mom to take pet scan and etc. Without Mom, you alone cannot really tell the neurologist anything. I think they prefer to see the patient.
Since the heat wave is bad and you still need to build the ramp, maybe you can consider a later date so you have more time. I know if Mom does not go at all in her lifetime is not your wish as you need to find out.
The details are really up to you if you feel a trip like this would make her sicker...
Maybe Sept. is a good time? This summer is hot for sure.

On the other hand, since you ask, you certainly can choose to forget about it and continue the home care now. But it is hard not knowing as you need to know. I don't think you would like this option unless Mom is too sick to see the neurologist.
Also, will this be useful to Mom now?
Hope you will figure out a way!

Take care,
Nina

Last edited by ninamarc; 06-25-2012 at 01:51 PM.

 
Old 06-25-2012, 01:49 PM   #3
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Re: Be Careful What You Ask For!

I'm probably in the minority here...but I'll go ahead and stick my neck out. I'm just wondering what you think the point of your visit is? How important is it and for what reasons is it important to know specifically what "type" of dementia your mom has? Will it affect the outcome in any way? Will it make her last years too much different?

Given how miserable she will be, is it all worth it...and to whom is it worth it?? I'm sure your mom could care less. So who are you doing this for?

 
Old 06-25-2012, 02:20 PM   #4
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Re: Be Careful What You Ask For!

I admit that it's mostly my own intellectual curiosity. Maybe a little of wanting to be proven right in my own "diagnosis" along with a good portion of feeling Mom should have a neurologist to call upon should she end up in a hospital again (as we're not on hospice and haven't taken the DNR/palliative care only vow, it's possible that we may indeed).

However, this would've been more of a no-brainer back when she was more mobile (such as when we visited the three neuros who dismissed her as having AD with hardly a glance at her when, in fact, she didn't fit the diagnostic pattern for that at all); now it's truly an ordeal to undertake! I may call and see if it's possible for me to substitute.

It would be just my luck to have the wheelchair bus break down and Mom die of heatstroke!

 
Old 06-25-2012, 07:06 PM   #5
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Re: Be Careful What You Ask For!

You do think yourself into a tizzy All! I do think you were right when you said this appointment was for your intellectual curiosity. You want that diagnosis. You want to prove yourself right. Will it be easy on your Mom to go to the appointment and then the scans... No! Will it be easy on you to figure out the logistics and get her there... No! Is it worth it? That is the question you have to answer.

I am actually with Teteri. You have to ask yourself what benefit this appointment will have for your Mom! Is it going to make a difference in her treatment plan? Is it going to make a difference in her well being?

Dad was misdiagnosed with Alzheimer's. Because of the disease progression I am sure he had Vascular Dementia. But it truly didn't make a different. I didn't put him through appointments and test just for that. In the end... it didn't matter at all. He had dementia and it took him from me....

Love, deb

 
Old 06-25-2012, 08:34 PM   #6
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Re: Be Careful What You Ask For!

I think I would stike a middle ground.

I would not take her out to this appointment at this time

I don't think you should taking her out until you have in place a system for getting her in and out of the house and in more convenient conveyance; you might also be able to arrange a medical transport and an aide to come with you to handle any issues that came up such as incontinence. A medical transport can often arrange to carry their wheelchair down depending on the number of steps or provide a portable ramp (again, depending on the number of steps). I think it is folly to try to handle outside trips alone without more structure in place.

But if you want to go to consult with him, you might benefit from that.

You could describe her history, behavior etc. and see what he has to say - does he think a personal visit would be warranted, does he have any ideas for her care that might be now. He himself upon reviewing the case might think it was a futile exercise, he might say he could do nothing without seeing her, who knows.

I don't think it is worth it if you are not willing to consider what he might say or suggest; in other words, I would not take her just to make myself feel better. But I might take myself to make myself feel better.

And then if he feels there is something to be gained you could decide at that time on a course of action.


Quote:
Originally Posted by all4mom View Post
Being the proactive type, of course I got on the phone to see if that October appointment with the ATYPICAL/FTL/HEAD INJURY dementia neurologist in the nearby big city could bump our appointment up any, given that my Mom is 93 and not in the greatest health. I'm in luck, I was told; there's a cancellation for this week! Great, I tell them! But then start thinking... There's also a HEAT ADVISORY for this week (100 and humid); we'll have to take the handicap bus at $1/mile ($60 total); I'll have to come up with some means of getting her wheelchair out of the house (either rent a ramp or build something; driver can't help there); she'll be miserable and hate it the whole time; she might have an "accident"; etc.

At this point, she doesn't even HAVE a neurologist (the last one quit taking my calls when she failed to show the second time), and this one would be an ace in the hole; he is THE resident expert in what I believe to be her unusual non-Alzheimer's type of dementia and, as was demonstrated, people wait months for appointments. He will no doubt have to order a PET or SPECT (another trip to the big city) to verify the diagnosis, and Mom will hate every minute of it! Now I wonder...

How important is it to go to what will be considerable trouble and discomfort? I've even considered asking if I could just go in her stead for a "consultation"; that would be of SOME help...

Last edited by Suzy0513; 06-25-2012 at 08:36 PM.

 
Old 06-26-2012, 09:29 AM   #7
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Re: Be Careful What You Ask For!

Generally agree that it would be an ordeal for her. I just very much regret wasting time and energy, now nearly three years ago, on useless appointments to neurologists in the same city with AD tunnel vision, as it COULD have made a huge difference to me in the beginning and to Mom along the way. It concerns me that FTLD isn't better known and more often or accurately recognized, identified, differentiated from AD, and diagnosed... I'll call the office; if they will allow me to come instead (a "consultation," of sorts) and my own insurance will cover a visit, I may go myself; knowing the enemy somehow helps.

 
Old 06-26-2012, 11:55 AM   #8
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Re: Be Careful What You Ask For!

All, I wish the medical profession was more aware of dementia in general. Yes, some doctor's stamp all dementia AD but others tell their patients that it is "just a part of aging" which is even more unfair. Dad was misdiagnosed with Ad when in fact he had VD. Mom was misdiagnosed with depression when in fact she has AD. Even after the AD diagnosis by a research facility Mom's doctor assured us it was just a part of aging and if she would focus more than it would all be ok. I had a psyco therapist tell Mom it was ok for her to believe what her damaged brain told her and tell us to leave her alone. This was after a diagnosis of moderate to sever dementia consistent with Alzheimer's. I had an ER doctor say he needed to talk to Dad about the specifics of an accident even after I told him Dad had ADVANCED VD. It is like trying to force a square peg in a round hole to get an accurate diagnosis. When we KNOW what is going on with our loved one, sometimes we just have to know even if the professionals don't. As far as it making a difference in the long run... it really doesn't. If you can rule out curable causes of dementia the rest is the same. It is a terminal disease with no effective treatment or cure. It is going to progress regardless of a diagnosis. Yes, it is frustrating that the medical professionals have not kept up with this disease and I do hope it is changing... but to beat our heads against that brick wall forever only frustrates us. To that end I would suggest you spend your time notifying your local Alzheimer's Association that there is a huge need for training of Medical Professionals in how to diagnose and treat dementia. Contact your medical professional organizations with the same message. Write a letter to all those other neurologist explaining that they misdiagnosed Mom in a non threatening way and suggest that they consider all the types of dementia when they make future diagnosis. I did have conversation with Dad's doctor. I am also working with the local Alzheimer's Association to start a risk bracelet program. The risk bracelets for cognitive decline are great but the best part is that it comes with education related to what cognitive decline is and how to handle patients with cognitive decline. Use that frustration to spread awareness to those that need it most. Those of us that care of a loved one with dementia get it and can be a catalyst for change!

Love, deb

 
Old 06-26-2012, 12:04 PM   #9
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Re: Be Careful What You Ask For!

"Write a letter to all those other neurologist explaining that they misdiagnosed Mom in a non threatening way and suggest that they consider all the types of dementia when they make future diagnosis." Actually, it's worse than that: they misdiagnosed her with AD when, in fact, what she had were BILATERAL CHRONIC SUBDURAL HEMATOMAS from a recent fall! That, in turn, led to the FTL dementia, in my opinion (compressed the brain). It took three months to get a second CT scan -- only when she finally developed neurologic symptoms along with the emotional/behavioral/cognitive -- and confirm this. In that case, earlier intervention COULD have made a difference (at three months, it was too late to attempt to "drain"), yet we were given Aricept and sent on our way. Argh! With all the public awareness of AD (a good thing), we've ignored other dementias (bad).

 
Old 06-26-2012, 01:53 PM   #10
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Re: Be Careful What You Ask For!

And you need to let the doctor know this. Just like NPH. Many doctor pass it off as dementia with the incontinence and irregular gate is a huge arrow pointing to a diagnosis that has a cure if caught early. Doctors need to be made aware of bad diagnosis!! They need to be aware that they are not listening and paying attention in the 15 minutes they see a patient. I think this is the major problem... they are on auto pilot and not listening. It's good to shake them up from time to time

I will still argue that there is not a major awareness of even Alzheimer's in the medical profession. Too many doctor still pass symptoms of all dementia off on old age or slap an easy label on it that doesn't fit. Yes, they do give drugs for cognitive loss but I will bet that has has more to do with kick backs from the pharmaceutical companies... and the need to do something when there may be nothing to do, than anything else. The lack of knowledge and appreciation of all cognitive impairments is a huge problem. Case in point... I have a period of cognitive decline when I was in my 40's. They couldn't pass it off as old age and had no clue what do to about it. I accidentally found the reason.... Statin medication for high cholesterol! It is a known side effect that is rarely mentioned. If the doctor had stopped long enough to listen and match the start of the symptoms to the medication change knowing the side effect.. it might not have taken a year to figure it out. This is why I say investigate you symptoms, don't be satisfied with the first answer you get, ask for second opinions, argue with your doctor when you don't agree with what they are saying, and let them know when you think they are wrong. We are a huge factor in our own health care... the doctor is only good as the information they have and what we allow them to get by with.

So never be afraid to second guess your doctor, ask for a second opinion, investigate the symptoms and the diagnosis and see if they match. If the doctor is in a hurry ask them to please listen to what you have to say. My Mom went to the doctor for breast pain. She was told that early breast cancer did not cause pain and she was not due for another mammogram. It was probably nothing. 6 months later she was diagnosed with breast cancer which had involved the lymph nodes and required chemo. We will never know if 6 months earlier the chemo could have been avoided. To that end she made an appointment with her doctor, explain to him that he should have listened to her, and wrote her name on his wall to remind him to listen to the next patient that tried to tell him something was not right

Love, deb

Love, deb

 
Old 06-27-2012, 02:03 PM   #11
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Re: Be Careful What You Ask For!

Just a quick update: I did call to ask if I could go in her stead for a consultation and was told no; since it's the first visit, he would need to see HER (logically enough). So then I spent hours and hours on the phone re: finding wheelchair ramps, which are rented by the month for $$$, and "threshold ramps" which must be PURCHASED (again for $$$), measuring steps, calling this place and that, who delivers, who doesn't, where will I find time to DRIVE to the big city to pick them up, will they fit in my compact car, etc.???

Then I conceive of a method of MAKING ramps out of thick plywood. Again with the measuring, calling (this time the local lumber store), ordering, taking time out of my WORK schedule although neither my brother nor any member of his family works to go pick them up; tonight I will try them out with brother as "test dummy" in the wheelchair.

If he lives, we'll go tomorrow; if not, I'll cancel both the appointment and handicap bus.

 
Old 06-27-2012, 02:09 PM   #12
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Re: Be Careful What You Ask For!

irregardless of whether you go tomorrow or not... if Mom is there dependent on a wheel chair you do need to make the house wheel chair accessible. You never know when you will need to get her out.... you never know what emergency might arise....

Love, deb

 
Old 06-27-2012, 02:10 PM   #13
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Re: Be Careful What You Ask For!

I just love how Medicare pays in full for the wheelchair, but not one cent toward the ridiculously pricey wheelchair RAMPS; once you're in the chair, how are you supposed to leave the house? I assume you are not! Our tax dollars at work; ya gotta love it...

 
Old 06-27-2012, 03:10 PM   #14
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Re: Be Careful What You Ask For!

Sometimes what they do is totally nonsensical! But, you don't have much choice when it comes to safety

Love, deb

 
Old 06-28-2012, 07:55 AM   #15
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Re: Be Careful What You Ask For!

Installing a ramp is surely a lot of work. We actually were looking into it back in 2008 or so when my FIL started using the cane. The first month he needed a wheelchair after being hospitalized for overdose of caumadin. I find that there is portable ramp that is not made of wood and it goes with the height of the stairs. Since my FIL was able to walk with a cane, we also thought of the railing for the ramp. There are so many kind of ramps. We felt the portable one was useful since his old house was too old.

Sure hope you will find your new ramp useful!

Hugs,
Nina

Last edited by ninamarc; 06-28-2012 at 07:56 AM.

 
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