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I cared for my mother for 8 years and she passed away in September 2014 with dementia. I was placed on Zoloft for two years due to severe panic and anxiety attacks. I am currently being weaned off due to side effects..mainly memory problems.
I asked my doctor who is a Psychiatrist/Researcher in this area to please test me for dementia/Alzheimer's however he wanted to wait possibly due to the medication. I am close to being totally off the meds and now want to seek answers to my condition but do not know where to begin. I do know that many of you are nurses and have dealt with these illnesses so I wanted to ask for guidance.

I do not know how long I should wait once removed from all medication to try to obtain testing. I am hoping that all this fog will lift and my memory will return but I am preparing for the worst as Alzheimer's ran in my grandmother's family down to dementia in my mother. I know you are probably saying "ask your doctor" however since he is a researcher and does medical trials I know he will want to put me in a trial and I do not think I want to do that.

I am afraid to tell my family what I am going through because it has only been two years since my mother was suffering with this and we were all losing our minds trying to figure out what to do. I do not want to lose my freedom and I know my daughter or sister may try to take over my life decisions. I do have a Trust but my daughter is only 25 and not mature enough to handle what I may put her through.

It has become more difficult to organize anything. Bills are sometimes forgotten. I have left things cooking on the stove and forgotten them. I live with my daughter and older sister so they catch what I don't, thank God! In wood working they say "measure twice and cut once" but I find myself measuring 5 or 6 times and then having someone else check too, "just to be safe." If I do not make a note, I will forget it....TV shows, appointments, paying the gardener, trash day etc. It is not just forgetting where my keys are, it is finding my scarf in the trash instead of the laundry or going to bed after working hard all day in the yard and awakening to realize I forgot to take a bath the night before or spending money on things I do not really need.

I have always been the one to rely on, the one in charge so this is very difficult for me and frightening. I also have gran mal seizures and take meds to control them. Can anyone offer some guidance please?

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I agree with Stacyb, from an earlier post here, I know for myself now that I have been hyper focused on the signs and symptoms. Any time my boss forgets something I am thinking is he starting with memory problems. Any time my sig other says something without a filter or forgets this or that, the same thing, not realizing he's been the absent minded professor all his adult life. And even worse when I am forgetting things :P

It is just that I had studied up on Alzheimer's and Dementia to a point where I am on brain overload. Plus I am 70, so I should realize I would be prone to forgetting things.

The knowledge will always be there, I just need to find a way to file it in my brain's filing cabinets, somewhere in a back file.
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While chronic stress alone may not cause Alzheimer's, according to the NIH, "Environmental factors including chronic stress may play a critical role in the manifestation of Alzheimer’s disease (AD)." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3263455/

For these reasons it's good for most of us to learn to manage chronic stress. We can't avoid it and that wouldn't even be good but the excess cortisol produced by excess chronic stress has been shown to have negative effects on our health.

I hope that you can find ways to lower your stress levels.
Carol
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I have found that keeping my life SIMPLE helps me. Downsizing to essentials, and comfort things, getting my paperwork simple and organized and in one binder, etc. The way I figure it, if there IS something wrong with my memory, it will be easier on someone else. If there isn't, there will be more time to do things that I love to do.
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If you are interested in Tau, here is great article about why they are interesting:
Biochemistry and Cell Biology of Tau Protein in Neurofibrillary Degeneration.
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I have yet to hear one doctor at Mayo researching Alzheimer's/dementia mention stress as a factor in developing it. They are centering their attention on "tau" proteins in the brain which might then develop tangles. Most stress is good for you. But, if you need a cause, then I guess anything will work.
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If I were you, I would see an attorney and get my own affairs in order because if you are diagnosed positive for dementia, you will not legally be able to.
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Stressed52 If You had dementia symptoms You would not realise it since Your thoughts and actions would become the new normal for You. Remember You have been through a very tough time Caring for Your Mom for eight years, plus You have been on medication. Give Yourself time to heal. Try to create a new Life for You, and enjoy the beauty of Life again.
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First of all, condolences on the loss of your mother. We have similar backgrounds with mothers' Alzheimer's histories, but I am a nurse and have participated in a clinical trial for Mayo for over 14 yrs. It is great having my PET scanned for free, and every two years I get tested with a battery of tests that test my memory. The best part of the all-day testing is them feeding me in their chef-prepared cafeteria! Seriously, you will help yourself and everyday researchers are coming closer to finding an answer to why the brain gets dementia. Your med for your seizures can also be contributing to your memory losses, so discuss maybe lowering the dosage or switching. You must tell your doctor what problems you are having! I am sure your daughter is already aware of your forgetfulness, but your word choices for your letter indicate your thought processes are still intact. If you recognize you are forgetting and misplacing things, that is not truly dementia. It is when you do not know where, or what you did when it becomes a problem and requires further investigation by a neurologist. Since there are no definitive tests to prove you have Alzheimer's, symptoms are subjective. It could be a deficiency of B-12, Vit. D, or another medical issue. So, after you have ruled out all medical causes (meds and herbal supplements too), then you can go from there. Discuss with your family what issues you are having because if you do get dementia, planning of how to care for you needs to be made. My best to you!
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lifeexperiences: You're very welcome!
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thank you llama lover!
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If you even THINK you might have dementia - then you don't because you are thinking too straight - my guess you are under 2 % at this time of having it - there is a small chance but don't bet the house on it -

Go forth & live your life well forever henceforth - get out of the mind set of dementia because there is a small chance you have it but a better chance you don't

FYI - just because you can't find your keys at 67 doesn't mean diddly squatt if you couldn't find them at 27! - a friend told me the other day that unless you find your keys in the freezer you have nothing to worry about... lol
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This is such a supportive thread! While early detection of dementia (often Alzheimer's) is very important, we are inundated with warnings that we may be developing Alzheimer's if...fill in the blank. Stress is a huge reason that many people have problems remembering things as well as why they make mistakes. Caregivers are inevitably stressed.

While I'm certainly not discouraging testing any time someone is worried, I do think that checking medications for memory issues (and taking the least amount possible) plus lowering stress levels are the first things to try. Often we'll find that by doing these two things, we've solved our problem.

I'm the first to admit that lowering stress levels is a major challenge. Yet meditation and other approaches that aren't terribly time consuming can help a lot. Thanks to the whole community for all of these wonderful comments.
Carol
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And I forgot to mention drugs. Sometimes metabolism of some drugs drops off as we age so they are effectively a stronger dose and maybe too much. Just today, someone came to see me complaining of memory problems - while taking Xanax, Ultram, Flexeril, Robaxin, and Neurontin...that they admitted to. Seriously, if they are giving you Topamax (topiramate) or had to go up on others, consider that and have them check your levels on any that they can. I had a cognitive reaction to statins unfortunately myself and it was pretty interesting, took a few weeks to go away.
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They may have some clinical trials for Alzheimers, but you don't get "put" into a trial, you get all the information and you have to decide you want to be a subject and sign a big pile of fancy consent forms...or not. And your treatment as a patient should have nothing to do with your decision to be or not be a subject.

As someone who has burnt more than one whistling tea kettle and now uses only a safety electric one for quite a few years now, I can say the differential diagnosis for the memory problems you are describing 1. is vast, and 2. starts with normal human being/normal aging/too much multitasking for one normal human being, especially one who is getting older. And "vast" includes depression, stress, fatigue, PTSD, thyroid disease, low or high blood sugar, nutritional deficiencies, menopause, as well as a variety of neurologic conditions. And YOU are writing so articulately and so well you don't even need a proofreader, and outlining such appropriate compensatory strategies for memory lapses that dementia is pretty much at the very BOTTOM of that list.

So see your doc. Or some other doc you trust better, And sure, all of us should have wills and POAs and all that...I'm hoping to get to mine sometime soon. Just my $0.02!
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lifeexperiences: Oh, I am so sorry for the loss of your mother just last week! Sending big (((((hugs)))) and prayers! !♡♡♡♡
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NJCinderella: Tip-periodically purge out the stuff you don't need or is obsolete on your phone's memo app! You'll feel better unburdening that from your brain!
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You took 10 years off from you own interests by doing the care & post care - if you had taken that much time off from exercise you wouldn't expect to go back [example] jogging or skiing without some low level strengthening then getting more intence as you recatch up to your prior status [I hope I'm clear here]

So to with your brain [& all of ours who are in this position] because there is the worry of the care taking, remembering app't, meds, etc - you have been for a long time in 'care' mode & all that it entails - start by read a light hearted [maybe humourous] book, go to crosswords or other puzzles, do a jigsaw on line [they're free] - we all have to be assertive as to brain exercise several times a week -

When I started to care for mom someone said to me that I was selfish of me not to take care of myself too - it was pointed out that if I got really ill then where would mom be - this is good advise that I try to maintain even when the time seems like I am 'stealing' it away from 'care time' for mom
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I learned some very useful information about getting tested.

It turns out that the standard neuropsych work-up, even at a teaching hospital, is NOT a very good way to find out if you have dementia. If you are intelligent, most of your results might still be above average when you are first tested, so they need to watch the progression to find out if it's dementia. My husband's first test suggested some problems, but he had a huge "cognitive reserve." I think a specific memory test would have identified his problems years earlier.

I went to a study for people with early dementia because I have noticed problems finding words, disorganization etc. They administered a 30-minute pencil and paper test that is designed to identify dementia symptoms. In a quiet room focusing exclusively on the test, I aced it. Yay!!! No memory loss to worry about!

The place I went to was the Boston Center for Memory in Newton MA. Bostonmemory. I have no connection with them, and the testing I got was free.They were very helpful and would probably know about resources in other areas of the country.

I suspect and hope that your issues are due to stress, normal aging, and efforts to multitask.

Planning for future disability is a good idea for all of us.
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Dear stressed52 -

Please!!! Take some time to "unstress" and finish removing the medications from your system. That will take time, as much as 3 months to remove the meds from your system (after the wean), and then time to adjust to the 'new you.'
I have gone through that battle! I am still missing memories from the years I was on meds.
For yourself, get an electronic calendar, like an app on a tablet. I have every bill that needs to be paid on that calendar, with a paydate, and the due date. Set the calendar to repeat each bill. For example, the electric bill is due on the 21st each month. It's paydate is the 14th, and date due the 21st. Have a set time each day that bills are paid. My electronic calendar has saved my hinney several times being setup this way.i tell people what I do, and they think it is a great idea!
To assist your body in getting back to a 'non-med' condition, start (and continue) taking B-12, as well as the other B vitamins. They are the vitamins that are most depleted by stress. Increase your water intake, and eliminate any foods with high-fructose corn syrup. Water to wash away the toxins quicker. HFCS goofs with the brain chemicals.
These are the things I did to clean myself from the meds I was on (they were seriously goofing with my memory!) and my memory has improved - A LOT!
Stress today still goofs with my memory... So I strive to stay calm when dealing with things I KNOW will stress me. Keep a small notebook & pen handy to take notes when you are under pressure.
One thing else- you mentioned finding a scarf in the trash instead of the trash. Were you on the phone at the time? I have talked to several people as a non-professional survey, and found that the majority of people that found things were missing, lost, mis-placed, put where it didn't belong... were talking on the phone at the time!! Yep! We don't pay as much attention while on the phone.
I'm not sure I agree with talking to a counselor, but a support group for families of dementia patients would be a great step. Just talking to others going through that will help you overcome your stress from the care of your mom.
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We all deal with stress differently - those meds are notorious for making people 'foggy' so that is most likely the cause -

a few years ago I started exercising my brain by playing games like consentration, problem solving etc to maximize my memory so try that but don't go at it like it's the be all & end all - relax & enjoy the games themselves - maybe just exercising those 'grey cells' will help - I hope so
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i took care of my mother for about 8 years...and she had dementia and died last week!!! i probably should have been on antidepressants because it was a very sad and stressful experience!!! when my mother died i was so sad but so relieved, i was having an out of body experience. i think you probably are so overwhelmed and stress from it all...that it has made the the smallest tasks difficult to do!! that is what stress does...wears you out! i've been unraveling ever since my mother died...first few days, i could feel the stress just pouring out of my body!!! i've been doing as little as possible and sleeping as much as possible! im giving myself plenty of time to get back to some type of normal life again. BE KIND TO YOURSELF...GO SHOPPING....GET A MASSAGE...SLEEP, SLEEP, SLEEP!! Good luck...and our loved ones are in heaven where they belong...and we have our lives back!! thank god for both!
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as I look around my office and see dozens of post it notes along the shelves, walls and computer monitor, I often wonder what others think when they come in but I also know I'm super stressed, energy is scattered with multiple responsibilities and that I don't take the MOMENT (time) to imprint what needs to be remembered. I file it under "later" or make a note. I think my brain is getting lazy because of reliance on notes, whether by post it or on my phone calendar. At least I'm hoping this is the case. I think that as I start to wind down my life (and relax!!!) there will be less to remember and pile on in the mental filing cabinet. But, a friend said yesterday my odds aren't that great because of my mother and 2 of her sisters having Alz...scary yes, worried not so much, aware of it, yeah maybe take some me time for yourself and let the fog clear before being too upset. Pay attention, be mindful of what you are doing and see if that helps.
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Sorry all, I'm new here and now realize I hadn't seen all of the answers before writing my own above, so some of what I said was a repeat. Glad to see you have life planning documents in place. If no one has mentioned grief counseling, that might be something else to look into.
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Research all the meds you take and see if any of them have memory issues as a possible side effect! Some do and many doctors don't take the possibility seriously.
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There's a lot of good advice from others here which helps me too, so thanks to everyone!

I want to first address your concern about your sister or daughter taking over decision making, for now or anytime in the future. You said you have a trust which is great. I highly recommend you discuss with your lawyer a Power of Attorney for Finances and Durable Power of Attorney for Healthcare (along with a Living Will) which enables you to choose in advance who will make decisions on your behalf should you become unable to do so yourself. You can choose different persons in each case. It can be one person acting alone, with alternates if they are unable or unwilling, or it can require more than one person to act together (they must agree on everything), again with alternates if you wish.That should prevent anyone not chosen from being able to make decisions for you, as long as those chosen accept the responsibility.

Second, I am aiding my sister who lives with and cares for our mother, and I too have been concerned about dementia with my forgetfulness. Others tell me no, that I am just in information overload and stressed. I've noticed that when my mind is not focused on what I'm doing, I don't know if I'm "coming or going," as they say. Mindfulness practice--paying attention and consciously thinking about what I'm doing--helps with that.
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Stressed you write like a cognitively competent person but clearly do have some issues that will take knowledgeable Drs to sort out. It may be to your benefit that your current specialists have retired. You may find new ones who are more up to date in their knowledge and research. I certainly hope so
Has the cause of your seizures been pinpointed. That would be a major worry for me. I would suggest that you do not go out alone not because you may not find your way home but because of the danger of having a seizure. Just because they only happen in your sleep currently does not mean that may not change again.
I do not believe in giving up but gracefully accepting any help offered and making the best of the abilities I still have and if possible adapting the things i enjoy doing to a way I can continue. A good example this Summer was continuing to grow the vegetable I enjoy fresh in big pots on my deck. You may enjoy something like going out into the wild and taking photographs. Well you could still do that by putting up feeders to attract different species of birds to your own back yard or follow the antics of chipmunks on the wood pile. no backyard no problem. How about a nest box with a one way glass back stuck to a window. Love pets but can no longer take on the responsibility. How about volunteering at a local shelter. The kitties there would love some one on one and a warm lap to sit on. As we get older and you are getting older we all have to adapt to our current reality and adapt to our personal infirmities.
It is also very important at any age to have some one to advocate for you in all healthcare decisions. I believe in not having a test if I could not have the treatment or the treatment would make my life miserable for many months. This is especially true of invasive tests that may carry some risk. you of course are young enough to survive most of the tests but make these decisions with you advocate and don't be bullied. Drs hate to be questioned or have a treatment "fail" i.e. the patient dies. That to them represents failure rather than peace for the patient. Think doing a colonoscopy on a 90 year old with advanced dementia who has rectal bleeding when he would be unlikely to survive surgery
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We just lost our beloved mother who had Parkinson's along PD dementia. My sister did most of the caregiving in the home, while we siblings came to help. I understand the stress of losing a loved one to a disease that robs them of cognitive thinking, and also movement in our case. A caregiver rarely has time to exercise, meditate, and do things that help alleviate stress naturally. I hope you find time to practice a kind of exercise that may alleviate your anxiety and give you release. I find yoga has been tremendously beneficial for me, in addition to taking long walks and riding my bicycle. I don't meditate, but have read about studies that it really helps with memory and focus. Please find time for yourself to get moving and quiet your mind. If there are classes in your area, I hope you can sign up for these. I wish you well.
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Thank you all for taking time to answer my question, you all have such wonderful insight and varied in different areas. I thought perhaps I should answer some of you. First of all I am 63 years old with a 25 year old daughter. I would like to be in my 40's however! I had no idea that it could take so long to recover from grief as you have suggested. I did feel like I was suffering from PTSD when my mother was admitted to the nursing home. I just could not handle her medical problems alone any longer and although I did care for her 8 years. I had also cared for her sister, my father, and my brother in law before caring for Mom so I had put some time in. When you add the fact that your sister is doing everything in her power to make things more difficult it just adds to an exhausting situation. Some of you mentioned a will or Trust and I am happy to say that I have just completed that and I have my daughter and younger sister working together to make decisions for me when the time comes. I do need to find another doctor and a Neurologist as well as both of mine retired. I am currently taking Zoloft for Panic and Anxiety and I am under the doctors care to slowly remove me from it and then see if a new medication is needed or not. The seizures are a different story I have taken numerous medications over the last 42 years to control my gran mal seizures. Currently I am on a low dosage of Keppra and my seizures switched from happening in the evening to happening at night. I have no idea unless someone hears me that I may have had a seizure. This medication was basically my last chance as the Neurologist had run through all existing medications on me. I have gone through menopause and I have had a sleep test that revealed no sleep apnea (thank God).

I am sure that although I am afraid to talk to my daughter and sisters about my memory problems, they know what is going on. I am corrected so many times during the day that I believe they probably have already had a family meeting to discuss my situation...after all how can I hide it. I do think that before I lie down and just give up I will take your advice and get out of the house and do things. Generally I do not like to go anywhere alone, however maybe I should work on that as well. Someone mentioned using a GPS and I had to laugh, I could not use that on a bet! I thank God for a smart daughter who knows how to fix my computer and set the sprinklers and yes work her own GPS because all of that has become too confusing to me. Several days ago I found a childs toy that I had bought on vacation a few years ago and it was matching two items hidden under doors. I thought I could play it with my mother however she passed away. When I found it I opened it up and was able to match two items after playing with it for about 10 minutes. I showed it to my daughter and asked her to play it and she had matched every item on the board in less than ten minutes. I then became concerned that my memory problem may be worse than I even thought it was.

About 5 years ago while on vacation with my daughter I was sitting in bed one night reading a book and my daughter said, "Mom do you realize that your head is bobbing back and forth?" No I had not noticed it but now I watched and did feel it happening from time to time and asked my daughter to point it out to me when it happened, however it was so frequent that I had her stop. My immediate thought was Parkinsons Disease. Then recently when this doctor began saying that Hillary Clinton was sick with Parkinsons I decided to look it up online and found that many things they spoke about, I experienced. I have not set up any appointments yet for any evaluations. I do have scoliosis and a pinched nerve so possibly that is the reason for head bobbing, I do not know.

I am really hoping that this is all stress related and that I can and will get it under control. I did feel very guilty that due to my health issues it led to my mother being placed into a nursing home where she was injured and died. I was so sick with the flu that I was not able to attend her funeral, although my older sister thought I was just faking it so I did not have to attend. I know I was under stress but vomiting and all that comes with it makes me believe I truly was sick with food poisoning.

Again I so want to thank you for your time and effort to give me insight and suggestions into my current condition. I pray that you are all correct and it is just stress, although I know I have to get that under control as well.
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Seek out a psychiatrist.
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As I was reading this I, I thought to myself, sounds like this person is on seizure meds!! As I finished your post, I saw that you were! I could have written this. I have been moms caregiver for several years even though she lived alone. I was on call 24/7 and got calls constantly from her or a neighbor saying she had fallen again. I & my niece who has POAs along with her doctor, had her placed in rehab and then into a memory care unit where she should have been for the past couple of years. But, she fought us tooth and nail. I was under enough stress that I was having trouble in my marriage, with my kids and grandkids and seeing things and forgetting things. She still has problems I or my niece have to solve but, things are so much simpler now and even though I still feel guilty, I know she is where she needs to be.
During this time, my daughter begin to pass out for no reason and have seizures. I was with her at her first neurologist appointment and he asked her questions and then questioned me about my seizures and cause. (I have a brain tumor found in the mid "70s). He asked what I had to take and I told him Dilantin 400 mg a day. He asked about memory problems, forgetfulness, foggy feeling, exhaustion, etc. Yes! He told me to get OFF of Dilantin asap since new studies have shown it causes memory loss and it is not reversible! He agreed it was a miracle drug when it first came out but have found long use to be detrimental to our memory process. I asked my Dr. about switching me to another med and he wouldn't do it. So, if you are on Dilantin and have been for a while, it could be some of the problems. Check with a neurologist!!
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