My mom just turned 62. At least 5 yrs ago she started losing memory and cognitive ability. I tried to get her to go to the dr or my dad to take her but no one seemed to react much. I guess he was partially in denial and partially thinking it was going to be early Alzheimers or something untreatable.
She was getting worse fast, and finally a few months ago I finally got her to agree to go. It turns out her cholesterol was over 300, and so from it being like that long term, it caused microvascular disease, visible in the MRI. I guess the result of that, is the massive dementia. I mean, at this point, she cannot even read basic words, can't understand or follow a lot of conversations, and sometimes she can't even find her way around the 1 bedroom apartment. Plus, she is not even aware anything is wrong. Her personality has always been to blame everyone else for anything and she thinks "she just gets nervous and forgets some things." She has no concept.
So she is at risk of a stroke or heart attack so is finally on cholesterol medicine, also an anxiety drug (they had to give that to her just so she'd stay still for the MRI), and also an Alzheimers drug.
I assume the brain damage is not reversible? So all this delaying made her far worse than she would have been if the cholesterol level had been found out years ago.
My question is, will the dementia keep getting worse now that she has cholesterol medicine? Or will it just remain how it is, which already is at a terrible stage for a 62 yr old.
Also, the dr said she has microvascular disease. So, does that mean that the dementia is then called vascular dementia, or are they two different diseases?
Microvascular disease is when the small branches of the arteries are damaged rather than plaque collecting in the larger arteries. It is common in those with diabetes or high blood pressure. It is also more common in women and thought to be related to the lower estrogen levels after menopause. The high cholesterol probably didn't help but I doubt it was the sole cause. There are so many factors involved in any vascular disease that there is truly no way to determine a specific cause.
Case in point. My Mom has a cholesterol of over 300 and it was untreated most of her life. She has no vascular disease of any kind. But my Dad who had a normal cholesterol without treatment had a variety of cardiovascular problems including vascular dementia, 3 heart attacks, bypasses, stints, peripheral artery disease, a-fib... and the list goes one. So there is not a direct cause and effect between cholesterol and vascular problems.
My Dad had Vascular Dementia and my Mom has Alzheimer's and there is a difference. Vascular Dementia usually follows the line of the vascular events that cause the dementia which is a result of the lack of blood flow to various parts of the brain. My Dad was diagnosed in 1998. He declined rather quickly but then stabilized until the next heart attack. He took a sharp downward decline and then stabilized again. This was repeated several times. His final decline came after he developed A-fib. But his was a result of macrovascular disease (of the large arteries) and not microvascular disease. His did not follow the standard decline common in Alzheimer's. He died in 2010... 12 years after his diagnosis.... of heart and liver related causes.
Mom is following the standard path of an Alzheimer's patient.... with no other health problems.... even though she is still on no cholesterol medication and her levels are still over 300.
Just because your Mom started cholesterol medication doesn't mean that the plaque that clogs her small arteries is going to disappear. It just means there will be less in the blood stream to continue clogging up her arteries. There will be some just not as much. So no she will not return to her normal self just because she is on the medication. There is also no assurance that she would not have developed this condition if she had been on the medication all along. Even with the medication this could have developed.
Age is the leading risk factor for heart attack or stroke. The fact that she has microvascular disease doesn't help her risk factor. But the fact that she is now on cholesterol medication doesn't take away her risk either. It is what it is and there is no magic bullet that will reverse or cure it. With macrovascular disease, which affects the larger arteries, they can use surgery or stints to open the arteries but because microvascular disease involves so many small arteries there is no comparable surgery. It is usually treated with medication. Dad was only 57 when he has his first heart attacked caused by a clogged artery.... despite his low cholesterol.
As for her dementia, if it is Vascular Dementia, there is a possibility that it will get worse, it may slow down, or it may stabilize for a while. Only time will tell. I doubt it will get any better. If it is Alzheimer's then the cholesterol medication will have no effect.
So I doubt the addition of the cholesterol medication is going to make any difference in the short term. It is to prevent plaque build up in the future and does nothing to fix what is already there.
As for what type of dementia your Mom has, that will have to be diagnosed by a specialist. She may have Vascular Dementia, Alzheimer's, or a mix of both.
So the high cholesterol is not the cause of the microvascular disease, it just aided it's progress. You said that there is medication for the microvascular disease though, she seems to not have been given that, just medicine for cholesterol and anxiety and an Alzheimer's drug.
So being on a cholesterol drug would not have stopped things if found earlier, but being on this microvascular drug might have? I mean as far as preventing or reducing the progress of the massive dementia. At 62 to not even be able to find your way around a 1 bedroom apartment, or to know how to find clothes to dress, all in a matter of 5 or so years, just seems so drastic.
Yes, Cholesterol is only one factor in the development of micro or macro vascular disease. Cholesterol medication is believed to help prevent the build up of plaques in the arteries over time. Plaques that causes Micro and macro artery diseases take years and years to collect. By introducing the medication after diagnosis, it doesn't make the plaque go away. It just shows the future build up. If the high cholesterol had been treated 25 or 30 years ago it might, and I say might, have made a difference. If it had been started a few years ago, it would probably make little difference. There are other medications that might help the underlying disease if the doctor thinks they are appropriate. They act directly on the blood vessels to improve the blood flow.
Treating the underlying microvascular disease is important for general health but it will probably not reverse the dementia. At this point there is no effective treatment or cure for Vascular Dementia or Alzheimer's. 62 is young for this extensive dementia. Has she been diagnosed by a geriatric neurologist? If this has developed over the last 5 years it sounds like EOAD.. Early Onset Alzheimer's Disease. If that is the case then it is unrelated to the microvascular disease. I would suggest that you ask for a referral to a geriatric neurologist for further diagnosis of what type of dementia she does have.
Also make sure all the legal papers are in order. If she is still capable you will need durable power of attorney, medical power of attorney, medical directive, and her will. These will make dealing with her affairs much easier. She is also going to need more and more care and supervision. Yes, it is a sad disease but at this time there is no prevent, cure, or even effective treatment. So please don't beat up on yourself or anybody else trying to place blame for why this happened. It just happens
Yes I am good at beating myself up at the what ifs. I tried to get people to take her to the doctor years ago and I think my dad just found it easier to be in denial, and to assume it was something untreatable and unpreventable. I figured that too, something like early Alzheimer's, but knowing it was better than not, and also knowing ways to possibly prolong her mental abilities.
Then when it turned out that supposedly it was preventable, then I really felt responsible for not trying more to try to get them to go. I was only hearing everything from the dr (family dr) indirectly from my dad's emails, but it sounded like she was just saying all the dementia is just a result of the microvascular disease.
My brother and I are now trying to encourage my dad to get her to a neurologist too, even if nothing is treatable, etc. She still is living with him but, he even is agreeing she is getting worse fast and that he doesn't know how long HE can mentally and physically handle it. He wrote that last night she was sitting up in bed in the dark. He asked why, and she said she wanted to go to the bathroom. He said he told her to find the door first and then go, she hadn't thought of that.
My grandmother, his mother, just died in December and we dealt with years of dementia with her. It's just that dementia for her started in her 80s, and so it was rough, but a bit easier to handle and accept I think than someone at this age.
Thanks. You did help me reduce my feeling of being responsible by not trying harder by saying that it probably could not have been greatly reduced or prevented anyway.
The following user gives a hug of support to amoeba430: ninamarc (04-23-2012)
I had a feeling that was what you were feeling and please know that there was nothing more you could have done that would have made a major difference. If Vascular Dementia was preventable then my Dad would not have had it. He had excellent health care until his death two years ago. Modern medicine can not prevent, treat, or cure many diseases... no matter what the drug companies say!!
The causes of micro and macro cardiovascular disease are still not completely understood. The discovery of Statins brought about a time when it was thought cholesterol was the main culprit. Just reduce the amount of cholesterol in the blood and all will be well. This is what the advertisements, the pharmaceutical companies, and many doctors tell you. But that is not what always happens. There is inflammation of the arteries which actually makes the plaque attach to the vascular walls. That is one reason why some with high cholesterol never have cardiovascular disease and some with low cholesterol do. Genetics play a huge factor in cardiovascular disease and that is not something we can change. And there are surely other factors that are unknown to us now. Diet, exercise, and stress are also somehow involved. Even if Mom had been to the doctor a few years ago, there is no magic bullet that would change the course.
Instead of beating up on yourself, pat yourself on the back for caring about your parents and their health! Yes, Vascular Dementia is a sad disease. I lived it with my Dad from 1998 when he was diagnosed until 2010 when he finally passed away. Uh huh... 12 years. A heart attack would cause a mental decline. A-fib started his final decline. Anything that affected the cardiovascular system affected his cognitive abilities. Because Vascular Dementia is caused by limited blood flow to the brain it makes sense. Yet not all that have cardiovascular disease get vascular dementia... and vise versa. As you can see there is no direct cause and effect, no magic bullet, that will prevent it, fix it, or cure it.
Right now you need to focus on the reality of the situation. Mom is getting worse and Dad may not be able to deal with her at home for much longer. Listen to him, work with him, and as a family come up with a solution for Mom to get the best care possible and for Dad to have some quality of life as well. And spend what time you can with Mom... enjoy her while you have her. Despite this disease you can have moments of joy with her.
Hope you hang around and type often. It's a long bumpy road...
Well, my mom was finally taken to a neurologist. I could not get off work but my brother drove in 80 miles for the appt to make sure that things were really addressed and people (my mom and dad) didn't downplay and excuse everything and not follow up on any info given. My brother said the neurologist was so different than the family dr, and took it all seriously, let them give examples of things, and then had them leave to do her own tests and memory test on my mom, which of course the dr didn't even mention that she massively failed it because it's so obvious. Along with the memory and cognitive problems she also seems to not see things well, but the dr agreed it's not actual vision, but the comprehension of the vision I guess. Not only does she forget how to eat right, but sometimes she can't even see food on a plate, forget someone trying to point something out across a room.
The neurologist didn't really give any quick titles to anything like the family dr did with microvascular disease and "maybe some Alzheimers too," but she gave her a new Alzheimers drug, Namenda, along with the anxiety and cholesterol ones staying the same. She is having her see a neuropsychologist for more testing, and a little more blood work, and wants her back in 2 months.
She was on another different type of Alzheimers drug, that my dad took her off of, then started again, but was stating she was worse. She could not find the bedroom in a 1 bedroom apartment, could not even find a bottle of water herself, etc. He concluded it was somehow related to this drug and once stopping it, she actually did get slightly better again. The neurologist could not say if it was related, but this drug is of a different class so he is trying it.
I would like to know what type of dementia it is to know more for the future, but it looks rather unpleasant whatever it is, and worsening rather quickly after only several years and being just 62 now.
So, I am glad there was some progress now, even if it has not helped anything yet.
at least you are making progress on a correct diagnosis amoeba. Yes general physicians throw labels and medication.... if they recognize the problem at all. They only have an overview knowledge of dementia. The neurologist will take his time and do more specific test. He has a more extensive knowledge of dementia and will listen because symptoms are important to the diagnosis. Hopefully when Mom goes back in 2 months, after the neuro-psychologist, you will have answers.
Aricept/Excelon and Namenda are not the same medication and work in different ways. Aricept/Excelon are best used in early dementia. Namenda is designed to work in the later stages. No, there is no way to know if what your Dad noticed was due to the medication or the progression of the disease. Actually there is truly no way to know if any of these work. They only promise a small slowing of the progression in some people. It does sound like your Mom is rather advanced. Don't expect any dramatic improvement and watch for side effects
A proper diagnosis is nice and there are some small differences between the different types of dementia but they are all basically the same. It is unpleasant no matter what dementia it is.
The visual problem is typical and it is probably the visual processing that is the problem rather than her actually seeing. Mom's problem was with her auditory processing. She could hear you but her brain gave her blah blah blah much like listening to a foreign language that you don't have a clue about. Visually there can be a number of problems including loss of peripheral vision. If you look straight a head you can see your shoulders wiggle... they can not. If you put your hands on each side of your face and block your side vision then you get a better idea of what they see. This narrows until they can only see what is directly in front of them. Then you have depth perception. Everything can look two dimensional rather than three dimensional. Color perception will make colors blend. So if you put chicken, corn, and potatoes on a yellow or white plate, she might not know it is even there. It all looks like the round plate. She might find the bathroom but not the toilet because the wall behind the toilet is a light color and she can't see the white toilet sitting in front of it. We have one resident that can't see the clear glasses with the red juice on the red table cloths but will find that white cup of coffee every time. When you know this, you can make adjustments to make it easier for her.
Also remember that she doesn't remember nor can follow instructions She will also loses the names of things. You can say, "go to the bedroom", and she will get the word go and start somewhere. But she has no idea where or what the bedroom is. She may not have any idea what you want her to do except go. She is just going somewhere.
If she is just 62, and it has been several years, then it is possibly EOAD, Early Onset Alzheimer's Disease. It is Alzheimer's when diagnosed prior to 65 years of age. You may want to get Rick Phelps/Gary LeBlanc's book "While I Still Can". Rick Phelps actually has EOAD (at 57) and he describes what he experienced in the early stages while Gary LeBlanc describes caring for his Dad for 10 years in the rest of the book. It is very informative.
Yes, you are making progress. You know what you are seeing is real. You already know what it is even if you do not have the specific type. What you do now is support your Dad and your Mom, help your Dad make rational decisions for the future, and help him deal with Mom. Learn all you can on how to make life better for Mom...
I read through the thread and see that you got some of this info and also a subsequent diagnosis.
I second this: Do not feel guilty or bad about anything. Currently there is no magic bullet you could have fired that would have enabled your Mom to sidestep any of this, really.
All you can do, you have done, and it is NEVER easy. There are always "what if we had done this, if only I had talked them into doing that" - you could torture yourself and for nothing. The situation sometimes just is what it is.
I think in addition to realizing that you have done everything you should, it is helpful to take the time to learn about the symptoms, stages, ways to talk with and handle the person and their spouse, etc. When you are not surprised by behavior or symptomps they are much easier to deal with.
And please make sure to give yourself the time and space to feel just bad or sad. At a certain point acceptance comes - you always work hard to get the best care and treatment, medical and otherwise, and you never stop feeling sad, but you accept that it is not like surgery or heart disease or something where your actions lead to good outcomes. So while the sadness doesn't disappear, and there is always a certain stress in making sure things are handled well, that churning, nonstop frantic feeling does not have to last forever.
Originally Posted by amoeba430
My mom just turned 62. At least 5 yrs ago she started losing memory and cognitive ability. I tried to get her to go to the dr or my dad to take her but no one seemed to react much. I guess he was partially in denial SNIP
Also, the dr said she has microvascular disease. So, does that mean that the dementia is then called vascular dementia, or are they two different diseases?
One other thing I have to add, which I hate to bring up.
But, you need to encourage your Dad to get to an attorney and an accountant.
POA's and alternates need to be established ( and it cannot all be him in case he ends up with health issues as well, you need a succession there).
Also, he needs to take a cold hard look at finances, whether there are assets or no assets. At such a young age, he is facing a lot in terms of her care and potentially his own care someday since she will not be able to help him.
I know it is hard to think about all this now but now or very soon, the legal and financial issues must be addressed.
I am sorry to seem callous at a difficult time, but the sooner you get a handle on these other issues, the better positioned your family might be later on to weather them. Small mistakes early on can cause a lot of problems later on!
It wasn't callous at all it was logical and practical, which is what I am. A little while ago he was mentioning something about getting POA, and then the last I heard, he was saying forget it because he didn't want to yell at her at a lawyer's office. I guess he would embarrass himself. Well, the simple solution to that is obviously just don't yell at her. The fact that he notices he has no patience with her and snaps at so much shows that he has some control over it since he is aware. But for this neurologist appt she had to sign on the forms they were filling out at home, and he actually got her to sign it (supposedly the hardest part is having her find where to sign). It took her endlessly trying on a piece of paper first (her lifelong perfectionism showing), and did get out some sort of semi-legible signature. So that did it for my every procrastinating and in denial dad, he's convinced he doesn't need POA now that she can sign. I wrote him today about it, saying it is not just me saying he should get it but other sources and internet information, but it didn't amount to anything.
Whereas I thought well isn't this the best time, now that she practiced, if she has to sign something at the lawyer, she's more ready and able now than later for sure. Plus don't you want to get POA before you need it, not once it's too late...
I will definitely look into the book, to read myself, but then hopefully to get him to read. Maybe it will pass on to him some more compassion and patience and a bit more thinking about what she herself is experiencing, if she is aware something is wrong with her (which is questionable, since her personality remains to blame everyone else for everything, I think she still thinks we are all making it up to gang up on her).
I am concerned for the future due to the typical avoidance and denial that takes place, that it will just make things worse for her and my dad. Anger and stress will start to eat away at his health, and her being more anxious surely does not help her any. I could tell someone 20x where the bathroom is and show them and not get impatient if they truly didn't know, but he can't handle more than 2x. However he still finds it easier to have them both be miserable than to maybe already look at putting her somewhere where she can get actually better care and more mental stimulation than what she has now. One positive (?) thing is that she walks very poorly from unrelated leg problems, so she could not wander off very far at all.
Thanks for everyone's info and support. I feel rather strange, people my age (31) seem to be focused on growing families and taking care of their young kids, and I am unsuccessfully trying to take care of my parents.
If you wait, the POA will become impossible. Any good lawyer will make sure Mom knows what she is signing. Too much coercion will be a tip off. My sister and I ganged up on Mom and Dad and went to the lawyer office with them. Mom knew what was happening and in full agreement. Dad was another story. Now that it is over it was funny. Mom was like your Dad, irritable with Dad and his dementia. He was slow getting ready, we were running late, and he didn't understand why we were going to the lawyer's office. So mom just snipped at him... "To get a divorce!". We got in there, the lawyer explained the papers to them both (both were signing their own POAs), and showed them where to sign. H couldn't find his pen so he walked out. Dad went crazy on us swearing he was not signing anything. HUH? Then he pointed to the pad on the conference table which said.... "Divorce notes!". The poor man thought Mom was divorcing him. I slipped the pad off the table and got him focused back on the POA papers. By the time the lawyer came back in with the pens Dad was fine! So you can't wait until Mom really doesn't understand to get the papers signed!
I do understand your concern for the future. I can empathize. Dad was more advanced in his dementia and Mom was in the beginning of hers. There was the same denial and putting off that you have. I do believe it is typical of the older generation to not admit difficulties and try to live through them rather accepting help. The situation with Mom and Dad was horrible for them both but they would rather have stayed right there in the mess forever. I think at one point Mom did have a clue she had dementia because of some of the things she did but she was also in heavy denial. At other times she didn't have a clue. The brain is a mysterious place. What they believe is real to them just like what we believe is real to us. They will come up with plausible excuses for what goes on. They do believe that they are right and the rest of the world is wrong. I have know a few that understood and accepted the diagnosis. Usually they are diagnosed early and accept the disease for what it is. Mom was not one of those! And there are some that do not understand the disease and never will.... or can not deal with the symptoms. When that is coupled with someone in denial that doesn't want changes you have a mess! The family may have to work hard to change Dad's attitude.
Don't be fooled by the unrelated leg problems. Dad had PAD and arthritic knees. He would never walk far without complaining. Going to the dining room winded him of his low blood 02 levels. But when the need to do something lodged in his brain he was off, going down two flights of stairs, walking right out of the door and down the middle of a busy road at 6 am when it was freezing outside with no coat on. That was the second time he had eloped. When the desire strikes they can do amazing things. Just be aware it is possible.
You are making progress and you can't say you have been unsuccessful. You are doing the best you can. You have her at the neurologist and started the diagnostic process. You accept what you have to deal with. Give yourself credit for the steps you have taken successfully. Yes, it does seem like it moves slowly and there is so much more that can be done. Just take it one step at a time. It is a long process from start to finish and it will happen one way or the other. Be patient with yourself