Due to language barrier and school level doctor said usual test wouldn't work., but said he does have alzheimers. when I look at signs it appears he's between stage 2-3.
I agree that testing is a good idea but there is also a time to stop the tests because of the stress and the fact that little more is determined. Good call Bigski. Carol
After my father had a fall and a cscan showed a small pool of blood on his brain, I took him to a neurologist for dementia testing. The same test was done for the 4 times we had appointments. The last test I knew was the last, simply because of my Father's anxiety and stress while answering these questions. He knew this stuff was easy, but yet he didn't know how to answer them. He told me in the conversation I initiated immediately after. I certainly do agree to see the Dr. to determine what is causing the problems, though.
Chimonger....thank you so much! You can be sure I will print everything out. I don't think thiscwill get to court as both my son's business and the bank who approved the mortgage are both in the county dad lived in and where dad was a very well respected elected official for many years. The court complaint also states that David ------ is the grandson of Mr ---------. All not very good for his business. I think between he and the bank they will give him a loan of the money, plus legal fees. As for Medicaid, dad is private pay. Thankfully he has about 8 years (as long as he stays where he is) before I have to apply. His elder care attorney also mentioned the mortgage we paid and Medicaid coming after him.
Lucy, I just searched: "Alzheimer's starts years before symptoms" [without parentheses], and got this first:, https://www.alzinfo.org/articles/brain-detected-20-years-alzheimers-symptoms/ , https://www.nlm.nih.gov/medlineplus/magazine/issues/fall10/articles/fall10pg19.html , which all say: Alzheimer's deficits can start 20 years prior to showing overt symptoms. Scientists tested well over 2000 people. They could see lower mental health test scores from those who went on to develop Alzheimer's. And that was only on the first page of the search....so guessing that, and also that the NIH is now putting that on their site, means it's accepted knowledge, and, it's been known for a relatively long time. For your case, though, you will need corroboration that she was not firing on all her pistons, when brother got her to sign away her house. IF she now needs Welfare help to fund her care, the State will surely come looking for whoever took her house and, where the money went or is going. It doesn't sound too good that the bro. has not stepped-up to make things right. He could get into some trouble with State, if they know he took her major asset, within the 5-year look-back period, which otherwise could have been used to fund her care. Hope this helps!
Jinx4740, thank you for the information. My son didn't let me down as he never had any respect for me, but in my dads eyes, he could do no wrong. It was my dad that he really took advantage of. And now dad never mentions his name. I never bring it up. Better something he forgets. Sad part for me is that he's keeping me from my grandchildren. I guess we're all being punished. It's in the hands of the lawyer now.
Lucysmom - Dementia isn't present, but some early symptoms are noticeable long before diagnosis. Unfortunately for your situation, a person who has been diagnosed may still be competent to sign legal documents. I'm sorry your son has let you down so badly. It sounds like your lawyer has a good plan. Good luck.
To the person who posted that dementia is present 5 years before signs, could you please let me know how you know this? My son had my dad sign what dad thought were divorce papers, when they were actually papers to use dads house as collateral on a mortgage. This was Aug of 2012, dad was diagnosed 2 years later. I had to sell dads house in Dec because he's now in AL memory care and had to pay off that mortgage. Dads elder care attorney has prepared a court case but gave my son the option to make good on the mortgage without going to court. So far he's done nothing. $73,000 will go a ways to care for dad. If I had some proof that dementia is present 5 years before symptoms, it may help me! Oh yes, and the son has not seen dad in 2 years, since I took dad to his office and confronted him about the mortgage.
jeannegibbs, Yes I do understand that. It has also been my experience that knowing the alz stage is uplifting enough to give me the strength and peace to handle being the ONLY caregiver. (others are around, but only pop in a handful of times per year. Nope, haven't figured out how to make people care!) ...also I think my mother has ALZ rather than LBD because she is accustomed to doing handiwork while sitting and I think she still reaches for things she can no longer do, like knitting or crocheting, mending, etc. I won't argue with the docs any, I wont win anything and the meds seem appropriate for now. Thanks jeannegibbs, for the reminder that ALZ is different. :)
Yes, there is a reasoning behind a caregiver wanting to know the stage. Each time my relative went to the hospital I balled my eyes out wondering if they would live through their ailment. To find out it wasn't life threatening at the time was helpful. For me as a caregiver, the stage matters, and doctors who don't seem to think we need to know seem insensitive~and I have been known to let them know so in a polite manner.
Got cut off..needs prompting when dressing or reminder that he was eating when he took break to pee. When this all appeared like something isnt right like asking same questions, repeating same stories yet all else was normal, played cards & games but slowly things chgd. I read all i can. Need to ck out memory care places now while he doesnt need them so when panic time comes i'll know where to go. We know we'll all die but their chances may be sooner. Think if my spouse, parent died tonight what would be the steps i must take now. First call? Much to think about assuming all legal DPOA etc have been done at first sign, no later or its too late. God be with us all!
I, like the others don't feel "stages" is anything more than a set of guidelines. An action today might lead one to believe a certain stage, tomorrow, an action might be defined as "another" stage. Deal with what is going on in the present moment, as behavior can change within a moment. One other thing I find when a loved one is taken for a check up, please involve the person in the conversation. Don't talk to the health care professional behind your loved one's back. Just that simple conversation or discussion could make the patient slip into a different behavior and if they are still early in their dementia, they have the right to have some I put. If it is not appropriate to the discussion keep going. That could also give you an idea of where their thought processes are. Go with the flow...and VALIDATE their voice. Good luck to all
I think most families are concerned with figuring how to identify what "stage", so they can figure out what to expect, and how best to cope, at each "stage" a person is in with their dementias. Sadly, there is a wide disparity between Docs, even neurologists, evidently, as to what stage an elder's dementia has reached. There aren't standardized tests used. But more problematic: ==Care systems [those in USA] are run by insurance companies, which pay less for care, based on lower-level diagnoses or severity of symptoms, than for higher-level ills. A patient who is under-evaluated in the severity of their illness, gets smaller reimbursements, and also can get under-treated, under-cared-for, both in facilities, and in their homes. ==Extended care facilities need to know, more accurately, what's up with patients! Assisted living homes, etc., can be stuck with higher-level-care patients, by families going to Internist Doctor #1 and getting the elder evaluated, then going to Neurologist Doctor #2 and also getting evaluated for same; the results can be startlingly different! They then use the lower-level diagnosis to get the elder into a lower-level, cheaper care facility than they need, to pay markedly less per month. Then they use the higher-level diagnosis at the lawyer's office, to manipulate who can be a POA on the elder's estate, and get the estate paperwork blocked to any further changes.
Placing an elder who is farther progressed into their dementia, in a too-low level of care, is potentially dangerous for the elder's actual level of deteriorating mental capacity. Some elders can kind of fly under the radar on that, as long as they are good at "show-timing" even the staff, until their symptoms get too advanced. ==In some things, the elder's should _not_ be allowed to keep doing things they are used to doing, even if they can still carry salient conversations....for instance: stopping them driving when they start having problems that could cause accidents, before they have accidents; preventing them ruining their estate or accounts needed to fund their care and needs.
It's all about making sure the elder is safe, and decently taken care of. As much as I'd also like to stop making labels and boxes to put people in, with the systems we currently have, the labels and boxes might be a necessary evil. Somewhere in the middle, hopefully we can still just give the care needed, based on observing what they are experiencing on any given day. They are not doing it to cause problems, only trying to get their needs met, and help calming their fears at the changes in themselves.
JoAnn29, thank you so much for sharing that! What a great 3-minute overview. In case the automatic url deletion process on this site deletes the url, anyone can find it easily by searching "understanding alzheimer's disease in 3 minutes."
Since this post is originally about "stages" I'd like to point out that this quick overview helps us understand how Alzheimer's does progress in stages -- that corresponds to how the damage in the brain progresses.
Other types of dementia may not progress in a similar way. The concept of "stages" just does not apply to Lewy Body Dementia, for example. Like ALZ, LBD does involve damage to the brain, and where the damage occurs is related to the symptoms displayed. But it is quite different than ALZ. For example, in this little video hallucinations tend to happen in a late stage in ALZ, but in LBD hallucinations may be the very first symptom noted. In ALZ, toward the end the ability to recognize people is lost. That typically is not not lost at all in LDB.
So, this specific pattern applies only to Alzheimer's. But other kinds of dementia share some characteristics:
1) Dementia behaviors are a result of physical damage to the brain. The cause might not be tangles and plaques but it is something that does damage, and that damage can be seen clearly upon autopsy. 2) The losses and behaviors and impairments of dementia are caused by physical damage. This is not psychological or willful. The person with dementia has no control over this damage. 3) A little less than half of elders with dementia has something other than ALZ. That means their patterns wouldn't look like ALZ patterns, but they are still caused by damage to the brain. 4) A significant number of persons with dementia have more than one kind of damage in their brains, complicating the progression they present. 5) At this point in science, a significant number of persons are diagnosed with the wrong kind of dementia when compared to autopsy of the brain.
Again, although this video is about ALZ, it can be very useful to persons interested in other kinds of dementia, as long as you realize the damage mechanism, progression, impairments, and intensities may vary from one kind of dementia to another.
To those who tried to help me...thank you! This is hard on our family, not just me. Certainly, no one wants to have any kind of illness and I'm finding out dementia is a horrible disease that robs someone of their life and is very sad to those that have to watch their loved one slip away. I've been made to feel ignorant and all but accused of elderly abuse by a few on this site but I will keep asking for your help. May God bless you all.
Gpa013, I wasn't "offended" by your question and don't know enough about your situation to be judgmental. I am glad to hear you are information-gathering.
I think the "is she manipulating us" is such a hot button for me because for 10 years I took care of my husband with LBD. A core characteristic of that kind of dementia is frequent and significant fluctuations in cognitive levels. I have heard heart-breaking stories in my local support group A care center accused one man of "trying to get attention" because he couldn't do something in the afternoon he could do in the morning. They thought tough love was a suitable approach. OMG!! And we had a young couple that came to a few meetings when her mother went to live with them. But they just could not get past the "why is she trying to manipulate us like this?" question to benefit from the experience of the group and they dropped out.
So whenever I see that attitude or questions I try to nip it in the bud. So good for you, Gpa013, for trying to learn all you can about this very strange a puzzling disease.
You need a Neuro-Phychiatrist. They can give them very simple tasks to do. I remember my mother's took 2 hours. It needs to be scheduled early in the morning when they are at their highest level of function. They can tell you exactly where your love one is at what stage. Before having the test done try to find someone who is a Geritrician or has experience in Geriatrics. They need to have their meds checked and possibly be slowing weened off some. They will need blood work. They can have deficiencies which can be fixed. It is a process but, it may help them function at a higher level.
@Hunter2, you are having a hard time! When he can't find the bathroom, some people paint the door red, or some bright color, so that he can find it. People with dementia can see things that aren't real. They can also daydream, and think that the dream is real.
Tell him that you love him and you will keep him safe. Tell us more about your situation, and we might have some good ideas.
In all fairness, the behavior of our Loved One certainly can look like it is deliberately designed to drive one mad. It takes a while to get used to reciting, "He can't help it. It's the disease." I can promise you that repeated questions in particular are never part of any game. I was once on medication that inactivated my short term memory. It is real, frustrating, and terrifying!
Mary Kathleen and Ferris, you came down on Gpa013 a little hard. Never ascribe to malice what can be explained as ignorance. Give the poster the benefit of the doubt.
Gpa013 - I think that might be your grade point average if you think your mother-in-law is "playing with you". No one wants dementia. No one wants to put relatives through hell waiting for them to die. Believe her. Trust her. And above all, stop being judgmental about any of her symptoms...
I agree with Vicky123. My sister & I are our parent's guardians. Our father has dementia (diagnosed over a year ago - but we think he's had it much longer than that.) Parents live in an Assisted Living Community, close to my sister (who checks up on them at least once a week). I live out of state but fly in every 3 months to visit our parents, talk to his doctors, and see how hes getting along. Dad is doing ok at the AL, but ONLY if Mom is there with him all the time. Mom is in denial most of the time about how bad he is deteriorating, so we MUST rely on his doctor's testing & assessment. My sister alerted me that Dad was having a difficult time recognizing his adult granddaughter & great grandchildren & other relatives he sees quite often. This has motivated us to ask his Doctor if Dad has moved over to Alzheimer's. He will be tested next month. This information is important to us to help make decisions moving forward. Without a professional assessment, we don't feel able to make a decision for him moving forward, and determining what Phase he may be in will be helpful to help Mom come to terms with her denial (as they respect the doctor's assessment).
The stage of the disease isn't of much use beyond a notation in a medical chart. It can't predict how rapidly or slowly the dementia will progress. In fact, more current methods focus on characteristics rather than numbered stages. Google "Teepa Snow" and read about her Gems model for characterizing levels of dementia and (more importantly) how to adjust to care for someone at each level.
WOW... I thought this place was a support site! It seems I've been judged to be a mean person. I'm not yelling at my MIL or doing any kind of abuse. I'm here asking questions to try and understand this disease from others who have experienced it. My husband shares the same concerns I do, we are both trying to cope with the situation. I think my question has been taken out of context.
GPA013: Mom would call me no less than 20 times a day at work to ask me the same three questions. Mom had nothing to keep her mind occupied, didn't want to engage in any social activity, and so obsessed on things that made her anxious. Anxiety medication made a huge change in her anxiety-driven behavior. This might not be the same situation that you have but worth considering.
Jean begins...thanks for your response. This is why I'm here - to learn and understand what is going on with my MIL's actions. Her PCP did the initial testing in office and the results were a high score, meaning she did well at recalling answers to the questions asked. I've been reading a lot of material on the subject of dementia. It doesn't look like the journey will be pleasant. I'm trying to locate as much knowledge and support as possible. I apologize if my question offended you.
Carol
Alzheimer's deficits can start 20 years prior to showing overt symptoms. Scientists tested well over 2000 people.
They could see lower mental health test scores from those who went on to develop Alzheimer's.
And that was only on the first page of the search....so guessing that, and also that the NIH is now putting that on their site, means it's accepted knowledge, and, it's been known for a relatively long time.
For your case, though, you will need corroboration that she was not firing on all her pistons, when brother got her to sign away her house.
IF she now needs Welfare help to fund her care, the State will surely come looking for whoever took her house and, where the money went or is going.
It doesn't sound too good that the bro. has not stepped-up to make things right. He could get into some trouble with State, if they know he took her major asset, within the 5-year look-back period, which otherwise could have been used to fund her care.
Hope this helps!
Yes I do understand that. It has also been my experience that knowing the alz stage is uplifting enough to give me the strength and peace to handle being the ONLY caregiver. (others are around, but only pop in a handful of times per year. Nope, haven't figured out how to make people care!) ...also I think my mother has ALZ rather than LBD because she is accustomed to doing handiwork while sitting and I think she still reaches for things she can no longer do, like knitting or crocheting, mending, etc. I won't argue with the docs any, I wont win anything and the meds seem appropriate for now. Thanks jeannegibbs, for the reminder that ALZ is different. :)
One other thing I find when a loved one is taken for a check up, please involve the person in the conversation. Don't talk to the health care professional behind your loved one's back. Just that simple conversation or discussion could make the patient slip into a different behavior and if they are still early in their dementia, they have the right to have some I put. If it is not appropriate to the discussion keep going. That could also give you an idea of where their thought processes are. Go with the flow...and VALIDATE their voice. Good luck to all
Sadly, there is a wide disparity between Docs, even neurologists, evidently, as to what stage an elder's dementia has reached. There aren't standardized tests used.
But more problematic:
==Care systems [those in USA] are run by insurance companies, which pay less for care, based on lower-level diagnoses or severity of symptoms, than for higher-level ills. A patient who is under-evaluated in the severity of their illness, gets smaller reimbursements, and also can get under-treated, under-cared-for, both in facilities, and in their homes.
==Extended care facilities need to know, more accurately, what's up with patients!
Assisted living homes, etc., can be stuck with higher-level-care patients, by families
going to Internist Doctor #1 and getting the elder evaluated, then going to Neurologist Doctor #2 and also getting evaluated for same; the results can be startlingly different!
They then use the lower-level diagnosis to get the elder into a lower-level, cheaper care facility than they need, to pay markedly less per month. Then they use the higher-level diagnosis at the lawyer's office, to manipulate who can be a POA on the elder's estate, and get the estate paperwork blocked to any further changes.
Placing an elder who is farther progressed into their dementia, in a too-low level of care, is potentially dangerous for the elder's actual level of deteriorating mental capacity. Some elders can kind of fly under the radar on that, as long as they are good at "show-timing" even the staff, until their symptoms get too advanced.
==In some things, the elder's should _not_ be allowed to keep doing things they are used to doing, even if they can still carry salient conversations....for instance: stopping them driving when they start having problems that could cause accidents, before they have accidents; preventing them ruining their estate or accounts needed to fund their care and needs.
It's all about making sure the elder is safe, and decently taken care of.
As much as I'd also like to stop making labels and boxes to put people in, with the systems we currently have, the labels and boxes might be a necessary evil.
Somewhere in the middle, hopefully we can still just give the care needed, based on observing what they are experiencing on any given day.
They are not doing it to cause problems, only trying to get their needs met, and help calming their fears at the changes in themselves.
Since this post is originally about "stages" I'd like to point out that this quick overview helps us understand how Alzheimer's does progress in stages -- that corresponds to how the damage in the brain progresses.
Other types of dementia may not progress in a similar way. The concept of "stages" just does not apply to Lewy Body Dementia, for example. Like ALZ, LBD does involve damage to the brain, and where the damage occurs is related to the symptoms displayed. But it is quite different than ALZ. For example, in this little video hallucinations tend to happen in a late stage in ALZ, but in LBD hallucinations may be the very first symptom noted. In ALZ, toward the end the ability to recognize people is lost. That typically is not not lost at all in LDB.
So, this specific pattern applies only to Alzheimer's. But other kinds of dementia share some characteristics:
1) Dementia behaviors are a result of physical damage to the brain. The cause might not be tangles and plaques but it is something that does damage, and that damage can be seen clearly upon autopsy.
2) The losses and behaviors and impairments of dementia are caused by physical damage. This is not psychological or willful. The person with dementia has no control over this damage.
3) A little less than half of elders with dementia has something other than ALZ. That means their patterns wouldn't look like ALZ patterns, but they are still caused by damage to the brain.
4) A significant number of persons with dementia have more than one kind of damage in their brains, complicating the progression they present.
5) At this point in science, a significant number of persons are diagnosed with the wrong kind of dementia when compared to autopsy of the brain.
Again, although this video is about ALZ, it can be very useful to persons interested in other kinds of dementia, as long as you realize the damage mechanism, progression, impairments, and intensities may vary from one kind of dementia to another.
blog.thealzheimerssite/understanding-alzheimers-in-three-minutes/
I think the "is she manipulating us" is such a hot button for me because for 10 years I took care of my husband with LBD. A core characteristic of that kind of dementia is frequent and significant fluctuations in cognitive levels. I have heard heart-breaking stories in my local support group A care center accused one man of "trying to get attention" because he couldn't do something in the afternoon he could do in the morning. They thought tough love was a suitable approach. OMG!! And we had a young couple that came to a few meetings when her mother went to live with them. But they just could not get past the "why is she trying to manipulate us like this?" question to benefit from the experience of the group and they dropped out.
So whenever I see that attitude or questions I try to nip it in the bud. So good for you, Gpa013, for trying to learn all you can about this very strange a puzzling disease.
Tell him that you love him and you will keep him safe. Tell us more about your situation, and we might have some good ideas.
Mary Kathleen and Ferris, you came down on Gpa013 a little hard. Never ascribe to malice what can be explained as ignorance. Give the poster the benefit of the doubt.
In fact, more current methods focus on characteristics rather than numbered stages. Google "Teepa Snow" and read about her Gems model for characterizing levels of dementia and (more importantly) how to adjust to care for someone at each level.