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What a great series of posts, this is exactly why this site is so awesome.
SoConfused - we've all been where you are and even today - for me basically a decade in my mom's decline it still is confusing. The testing and reporting over time have been wonderful in figuring out what to be concerned about and what to accept is the path of dementia & aging. What is often overlooked is that dementia is a terminal disease. Now it's not usually listed on the death certificate as such, but over time the dementia (whichever type) will lead to a total breakdown of their competency & cognitive abilities if they live long enough. Most with dementia have other co-mobidities - like diabetes,heart disease, cancers - that cause death sooner. But the dementia on it's own, will bring about death. So if the testing can determine which dementia, it gives you a better path of taking care of or being an advocate for your elder.
For us, the testing led to mom being diagnosed with Lewy Body Dementia. She was pretty classic Lewy - the animal hallucinations, shuffling walk, visual disortienation, but she continued to know family and current events for much much longer than someone with Alz would. Lewy is very different in it's disease arch than Alz or FTD for most of the disease process. Exelon works well for Lewy, while Aricept is just meh (& is better for Alz.). Also for Lewy, you have to be super careful on the psych meds, as most of the common ones are totally wrong for Lewy and can cause extreme problems. Knowing that Lewy often has these visual / spacial issues was good, as we could change the lighting & surface textures in mom's IL and then later in her NH room, to make it easier for her mind to process how things looked to her.
The one thing I would do differently would have been to make my mom move to IL earlier than she did. (I forced her to move to IL, lots of dramarama from her on "you can't do this", crying & hand wringing while the movers are shrink wrapping her furniture, and then a couple of days later I called her and she hung up quickly on me as she was late for the bus trip to Steinmart..…) IL & AL's just have so many things for them to do and keep their brains going. For me it seems that if you wait and keep them at home till they are at the point of needing a NH, they just go downhill fast once there. It's a high bar for them to make the transition. In a way it's like having a child and seeing that those that go to early childhood programs, then to PreK then K just do so much better than those who stay at home till K. Those in early childhood & preK know the system: getting their sit-upon, having a cubby, 2 fingers for petting, "little voice", schedule for naps & meals, etc. Its much the same for the elderly for IL, AL & NH. Hopefully you & your sisters can use mom's assets to be able to afford IL or AL for her.
I tell my younger patients that a good neuropsych is like getting an owner's manual for your brain. It gives details of strengths and weaknesses of brain function in much more detail than just an IQ test or MMSE, and a full battery is at least a half day full of both face to face and paper and pencil type tests. In your situation it is probably very worthwhile to help resolve the different perceptions of you and your siblings. It may not on its own provide a specific medical diagnosis but may have a pattern more consistent with Alzheimer's, vascular dementia, traumatic brain injury, stroke, depression or ADD. It will look at different types of memory, attention, concentration, executive function, reasoning, perseveration, spatial perception, and processing speed. It usually can provide recommendations on how someone will learn best in school, and in elderly adults, what kind of supports may be needed. It might or might not indicate that driving is inadvisable; if relevant deficit areas are not terribly severe, a behind the wheel evaluation is still important for that as well. It can provide a really big piece of the puzzle for you.
In my opinion these tests can be very intimidating for an older person and make the person feel nervous and under pressure . I think they are an invasion of our human rights . Old people are being prescribed far too many harsh drugs some of which do more harm than good . Becoming a bit forgetful as we grow old is quite natural NOT a druggable offence. !! There are too many psychologists around wanting to pry into every corner of our lives. Many old people are being exploited by the pharmaceutical companies who have turned old age into a mental illness . I say keep a close eye on your elderly relatives and always check their medications for possible side effects because many are worse than the initial complaint!
You can expect a lot of baloney and a lot of wasted time! The more you diddle with doctors, the more frustrated you will become. They don't know squat! After my husband had been diagnosed with dementia by our primary physician four years ago, she sent him on to a neurologist for confirmation, who diagnosed him with Alzheimer's. I decided on a third opinion, as did my husband, who was still able to think rationally at the time. I took him to a gerantologist (I did not spell that right), who deals with elderly people. She had a nurse run a battery of oral and written tests on him, and she said he "passed with flying colors." She said to him, "Nothing wrong with you!"
Well, she was wrong because four years later, he is now holding a fake ticket in his hand waiting for a train to take him home (he IS home). I know more about his condition and what to do for him than a whole room full of doctors.
I would have to ask who referred your mom for a neuropsych eval? Does she live on her own, or with you or in a nursing home? And, how old is your mom? My mom was living in an independent apartment in an elderly community. She fell twice in two days. I insisted that she go to the emergency room. Anytime they fall, a Brain MRI is usually ordered to so if there was a stroke, etc. In my mom's case, the Brain MRI showed too much spinal fluid in her brain which caused Normal Pressure Hydrocephalus. This condition causes memory loss and problems with walking (at some point). My mom's memory problems were not dementia and it was just that she would forget how to use the microwave to heat up the food I brought her, plus other things. Just memory problems but not dementia which is what some would want to call it. She has been in and out of nursing homes to rehab and then come back home to me. We have a problem with that too. In older women, they can no longer articulate the symptoms of a urinary tract infection (it hurts when I pee). I googled the symptoms of a UTI in an older woman and they become delusional and way out there. I had to tell the facility when my mom had a UTI because they did not understand what an older woman's would be. Every time I told them to test her for a UTI because she was talking crazy, i.e., did I know that this CNA washed up on the beach yesterday; did I know that they were performing sex change operations on the third floor of this hospital; that she had read (which she can't even do anymore) that I had registered to have an abortion (I'm 65) or that I had registered to get a divorce, etc. Because of these crazy comments, she has twice had neuropsych evals and they determined that she needed medication and they put her on this medication without even discussing it with me. All this time, she had a UTI and that was causing her delusional comments, not a psychiatric disorder. Plus, if her memory fails, my mom does not want to be prescribed any meds for that. She is a little old lady and has every single side effect of any medication they prescribe. Just make sure you are doing what is best for your mom, even if that is not what the doctors want you to do.
Willows, it seems to me that the docs who specialized in brain function diagnosed your husband correctly. A doctor who is trained in the care of the elderly and not a specialist in cognitive function is not a place to go to counter a dx of dementia from some who specializes in that field. I'm sorry he has this sad disease.
UTI does not usually cause psychotic thoughts all by itself - the inflammation aggravates what is there already and pushes it over the top so to speak. Younger people with UTI just report bladder symptoms most of the time. My mom would get worse cognitively with cellulitis as well as UTIs, and she and lots of people just don't report symptoms at all or if they do it is not in a straightforward way where you could guess what was going on...the other two things that most commonly don't get described well are acid reflux symptoms and foot pain - you have decreased appetite (maybe because it hurts to swallow) or back pain or congestion in the AMs for the one, and just "I'm tired and I need to sit down" for the other, all the time.
Side effects are for real, unfortunately, and some people are more prone to them than others; many of us are more prone to them than others. I hate to rule out all meds for all people like that; I'm one of those people and, I am VERY grateful for the meds I do tolerate and benefit from.
I'll be hopeful that treating the NPH helps, but it doesn't always; if the memory and judgement problems as you describe persist after that and treating the UTI, it could be they really are symptoms of dementia after all...I understand you are sure hoping its not, of course!
OK I do not think that normal old age needs to be medicated however when that person is miserable because they are "seeing" animals and attacking caregivers it is time for medication.
ba8alou, you will recall this doctor was a THIRD opinion, and it was my decision to see this particular physician, who ran a battery of tests on him. The neurologist, to whom our primary physician sent us, who diagnosed him as having Alzheimer's, asked him to name the months of the year backwards, and my husband wasn't able to remember beyond September. Based on THAT test, this "neurologist" ascertained that he had Alzheimer's. The gerontologist had him respond to many questions, both oral and written. I did the right thing; no regrets since he had already seen our primary physician and subsequently a neurologist.
This is a fairly "new" field in the medical profession and there are some doctors who really aren't qualified. The first neurologist I took my mom to just didn't get it. However, we were more fortunate later on in that after finding a wonderful gerontologist, she referred us to a neuropsychiatrist, and both of these doctors just nailed it all the way. Fortunately, we were referred to these doctors by others who had had much success, success meaning finding out what exactly is going on.
Truffles, I like the way you think, and I agree with you 100%. I would urge every caregiver who is caring for a loved one with Alzheimer's to read "The Myth of Alzheimer's" by one of the leading neurologists in the country. My daughter asked me to check it out at the library, and I am so glad I did. There will never be a cure for Alzheimer's, and you need to read this book to find out why. In the meantime, the pharmaceuticals are raking in billions of dollars!
I'm learning a lot about this type of examination on this thread.
My cousin is scheduled to have one with a Neuropsychologist very soon. I'm afraid she will get overly anxious, start crying and have a melt down in the room without me. She lives in AL, but I attend all doctor appointments with her. She's very insistent on that as she is very insecure and easily frightened of new situations. She also hates tests and never did very well in school. I'm afraid she will feel like she's back in school and shutdown. Do they know how to handle people like that?
Sunnygirl: short answer is yes, at least they SHOULD and USUALLY do. Let them know in advance she's a nervous Nellie, and maybe give her the examiner's picture in advance with a little positive hype. We have to get kids to separate from parents for these sometimes, and they can usually do it - in fact they make a note on how easy or difficult it is.
Sunny, keep explaining to your mother that it isn't the kind of test where there are right or wrong answers - she'll get a gold star no matter what. My mother doesn't get nervous about that, exactly, but she can get so scared she won't 'do well' that she doesn't want to answer questions at all. Schooling has a lot to answer for, sometimes!
My mom is the same way; recently, she was in the hospital and the nurse wrote her "fall risk" number on the white board in her room. Mom kept pointing to the board and crying. After reading everything on the board, my brother said "58 mom? Are you worried about the 58?" Yes, yes indeed she was. She thought she was failing something. Oy
We've never taken the 2-4 hour battery of tests because my father denies that he has a problem and I'm not sure he has the stamina for that much testing. I'm sympathetic since I didn't have the stamina for my graduate exams, but most of these posts don't indicate the person being tested got tired. In the shorter tests administered by a social worker at the gerontologist's office, he was asked to count backwards by 7 (which I have trouble doing) and spell something backward (which I also consider difficult). The thing that keeps throws him off the most is when they ask him date, day of the week, and season because, frankly, he's retired and doesn't keep track of that stuff unless he has an appointment or it comes up in conversation. I wonder if medical professionals - on the clock - can relate to this. The best medicine for him is small inclusive social situations in which he can keep track of the conversational flow.
My Mom was diagnosed with Memory issues over 6 years ago but showed slight memory problems couple years before that; had an MRI which showed brain shrinkage and has had a mild stroke. She in currently living at a Memory home. She takes Aricept & Namenda. Never had the extensive 4 hr testing done for what type of memory loss she has. She is 81 now and doesn't seem to be progressing much in her memory loss - just keeps asking if my Dad is alive (dead 5 years) and where she's at/when she's going to go home. She's been there little over a year and still keeps packing up her things to leave. Tried two different daycare places; one was very nice - she fought me the whole drive their, but was happy when I picked her up, but was kinda far away. Would have liked to keep her at home with someone coming in during the day while I'm at work, but she fought it. Not extremely happy with where she is for the cost of it, but I couldn't handle the stress of caregiving at home, she lived in split level home and had a hard time on steps.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
SoConfused - we've all been where you are and even today - for me basically a decade in my mom's decline it still is confusing. The testing and reporting over time have been wonderful in figuring out what to be concerned about and what to accept is the path of dementia & aging. What is often overlooked is that dementia is a terminal disease. Now it's not usually listed on the death certificate as such, but over time the dementia (whichever type) will lead to a total breakdown of their competency & cognitive abilities if they live long enough. Most with dementia have other co-mobidities - like diabetes,heart disease, cancers - that cause death sooner. But the dementia on it's own, will bring about death. So if the testing can determine which dementia, it gives you a better path of taking care of or being an advocate for your elder.
For us, the testing led to mom being diagnosed with Lewy Body Dementia. She was pretty classic Lewy - the animal hallucinations, shuffling walk, visual disortienation, but she continued to know family and current events for much much longer than someone with Alz would. Lewy is very different in it's disease arch than Alz or FTD for most of the disease process. Exelon works well for Lewy, while Aricept is just meh (& is better for Alz.). Also for Lewy, you have to be super careful on the psych meds, as most of the common ones are totally wrong for Lewy and can cause extreme problems. Knowing that Lewy often has these visual / spacial issues was good, as we could change the lighting & surface textures in mom's IL and then later in her NH room, to make it easier for her mind to process how things looked to her.
The one thing I would do differently would have been to make my mom move to IL earlier than she did. (I forced her to move to IL, lots of dramarama from her on "you can't do this", crying & hand wringing while the movers are shrink wrapping her furniture, and then a couple of days later I called her and she hung up quickly on me as she was late for the bus trip to Steinmart..…) IL & AL's just have so many things for them to do and keep their brains going. For me it seems that if you wait and keep them at home till they are at the point of needing a NH, they just go downhill fast once there. It's a high bar for them to make the transition. In a way it's like having a child and seeing that those that go to early childhood programs, then to PreK then K just do so much better than those who stay at home till K. Those in early childhood & preK know the system: getting their sit-upon, having a cubby, 2 fingers for petting, "little voice", schedule for naps & meals, etc. Its much the same for the elderly for IL, AL & NH. Hopefully you & your sisters can use mom's assets to be able to afford IL or AL for her.
Well, she was wrong because four years later, he is now holding a fake ticket in his hand waiting for a train to take him home (he IS home). I know more about his condition and what to do for him than a whole room full of doctors.
Don't waste your time or your money! Bleh1
Side effects are for real, unfortunately, and some people are more prone to them than others; many of us are more prone to them than others. I hate to rule out all meds for all people like that; I'm one of those people and, I am VERY grateful for the meds I do tolerate and benefit from.
I'll be hopeful that treating the NPH helps, but it doesn't always; if the memory and judgement problems as you describe persist after that and treating the UTI, it could be they really are symptoms of dementia after all...I understand you are sure hoping its not, of course!
My cousin is scheduled to have one with a Neuropsychologist very soon. I'm afraid she will get overly anxious, start crying and have a melt down in the room without me. She lives in AL, but I attend all doctor appointments with her. She's very insistent on that as she is very insecure and easily frightened of new situations. She also hates tests and never did very well in school. I'm afraid she will feel like she's back in school and shutdown. Do they know how to handle people like that?