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?
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
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.
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
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.
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.
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
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!
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
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
Biochemistry and Cell Biology of Tau Protein in Neurofibrillary Degeneration.
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
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.