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?
We all think of our children as being a lot younger than they actually are and certainly not able to make mature decisions for us. Your daughter is 25 and that is plenty old enough to take on responsibilities. The nurses in the hospital and the young Drs have mostly graduated by that age and take on enormous responsibilities for our care.
No one wants to give up their independence or have others direct our living arrangements but if and it is a big if you can no longer safely do it then someone else has to step in. After all your sister and daughter are already looking out for you. Do you have to look out for them too? Are you all making similar mistakes?
Start now to set up systems to make sure some of your mistakes don't happen. if you have a steady income put your bills on automatic payment. saves a stamp and makes sure nothing is missed. Carry a diary around with you so if you are given some thing like an appointment or other important information it won't get forgotten. Get a GPS for your car so you can always get from place to place ,especially back home. Keep a large notebook by the phone so you can immediately write down phone numbers or messages. Always repeat things like phone numbers back to the caller so you catch any mistakes immediately. carry important information in your purse such as family phone numbers and a list of your medications and allergies and contact information for family. Arrange your purse so you can easily put your hand on things like credit cards or your health insurance card. Use post it notes to put places like the fridge or bathroom mirror to remind you of the days important activities.
Remember everyone is different so it tens differing lengths of time to get over traumatic events like the death of a loved one.
Of course it is possible that you do have early dementia and getting tested is a good idea but it is also possible that you have something equally nasty like heart disease or a brain tumor. If the blood flow is decreased to your brain as in heart or lung disease that can also produce the symptoms you describe. For these reasons it is equally important to have a complete health check up not just a dementia evaluation. on't hide anything from your Dr they are not allowed by law to discuss your heath with family members without your permission.
Your symptoms could be caused by many things, from other meds to brain illness.
If your doc is not listening, and you feel dismissed, go elsewhere. Make an appointment with a neurologist as they are brain specialists and expert in diagnosing and treatment of the brain. I have been a nurse for over forty years, and I know there are answers to you questions. Blessings.
I learned afterwards that the reason I could not learn anything new was that I had no deep sleep and long term memories are only formed in deep sleep. The reason I was depressed was because I could not dream and the mind needs to do that, usually 3 cycles a night.
Once I started using the machine, all the abilities I had counted on throughout my life came back: problem solving, creativity, detailed memory, etc. I had already resigned at that point because I didn't want to become an embarrassment to the school. Once my memory was working again, I found many mistakes I had made in the fall with book ordering and cataloging and other poor judgment errors.
Now they find a correlation between sleep apnea and dementia issues. It is only in deep sleep that the brain does its "clean-up" activities at night, getting rid of the waste by-products from an active mind during the day. Those waste by-products are those things that form the clusters related to Alzheimers. Exercise which includes walking and strength training are also things to do to avoid Alzheimers, along with doing puzzles and creative things. But getting good sleep is key.
I have been using a CPAP machine since 2005 and it is a life-saver. There is a 100% correlation between sleep apnea and hardening of the arteries, too. If you have S.A., your arteries are getting clogged. When you stop breathing at night, your heart starts racing trying to get oxygen to the brain. Your body gives you a jolt of adrenalin to make you gasp and start breathing again and adrenalin irritates your arteries. That's a danger and your body's response is to lay down cholesterol. I got my CPAP machine in March and the following December had an emergency quadruple by-pass due to my clogged arteries. The clogs were near my heart where arteries branched and no stents could be used. Knowing the harm sleep apnea does to me physically as well as mentally, I never try to sleep without it. If the power goes out at home, I head to a motel with electricity.
I am in charge of a friend with memory loss and understand some of what you have gone through and am sensitive as well. Each time I forget something, I question myself--is it starting with me, too? I am doing everything I can to stay physically and mentally healthy, but it all starts with good sleep. Best of luck to you on this journey!
I can totally appreciate what you are saying. First of all I'd like to say that your post is extremely articulate. It doesn't sound like it was written by someone who has a "cloudy" mind.
I would strongly suggest that you do things that will take your focus off the negatives. Yes, that's easier said then done, but it is important for your well being. (At 95 my aunt was still doing volunteer work).
Also, make sure that you are properly hydrated. As we get a little older, poor hydration can wreak havoc with our mental status.
At times when I can't remember something, it would be easy for me to think that I have dementia (another aunt had Altzheimers, and my mother had dementia). That's when I take a deep breath and remember that when I was in my early 20s there were times that I put my keys in the fridge, and my purse in the closet.
I guess what I'm saying is that it is easy to think that we have dementia, when in fact there are a lot of other issues that may be causing the problem.
Best wishes. You WILL get through this. I'm rooting for you!!!
There may be many factors going on ..stress..you focusing on the little things that you might forget (we all forget stuff day to day) I have said I don't worry about loosing my car keys..it's when I forget what the car keys are for that I have to worry.
I hope you are going off medications under the direction of a doctor. Some medications can cause side effects while on and can cause more going off the medication.
Some of your concerns may be valid...
I think you need to talk to your sister and daughter about your concerns. And if possible one or both should go with you to your appointment when you get tested.
They may also have noticed many of the things that you have expressed and they may be concerned as well. (but don't want to bring it up out of fear)
And why would you not want to be in a Medical Trial? I had my husband in one and I really do believe that it helped, probably more than the Aricept or could it have helped boost the effectiveness of the Aricept? I will never know...All I do know is that he was doing things far longer than is "typical" and is still doing this that he really should not be doing at this stage. Was it because of the trial medication or is it because he is still the "Stubborn Pigheaded German" that I fell in love with 36 years ago?
Get tested...share your fears with your daughter and sister..begin to make plans now that will make each transition as easy as possible for you and them. Agree now that if you are diagnosed with any form of dementia that you will go into Assisted Living..if that is what you want to do...or get caregivers in..Make your plans now.
Diagnosis or not make plans POA, Trusts, Living Will, do you want a Guardian appointed? if so who? These are things we should all do.
And lastly...encourage your daughter to get Long Term Care Insurance for herself.
Take care of yourself. We'd love to have you update us on how you are doing.
Carol
imo
Throw your hands in the air, yell out, what's next? Say out loud, "I can get through this too!" Bring it on! (few swear words here if you are so inclined).
After reading it, check back and tell us how you feel.
Also, have a check-up with your primary care physician-thyroid, fibromyalgia, grief, stress, a vit. D or B-12 deficiency, iron deficiency---all this and more can mimic dementia.
Of course, you can't know for sure, but most people who have dementia, aren't trying to get to a doctor to get it diagnosed. Most people with dementia don't realize it and are resistant to the idea. You are not that way, so, that's something.
I'd work on stress relief and get her your health back before you do tests. There's no rush, right? You can get tested in a few months, when your stress level is down.
I agree with others that your memory affect is probably due to all you have been through. Grief counseling may help you unload the burden.
I also feel like I am losing my memory. My primary doctor said that is normal when under so much stress. Also my new talk therapist is saying the same thing. It will take awhile to de-stress even when taking meds. I also take meds and there are some side effects as you had noticed with your own memory.
If I don't remind myself with notes, forgetaboutit, it doesn't get done. And here I use to be so organized. I think some of that is side effects from the meds. I am too tired to care.
As for the falls, there really isn't much one can do to help eliminate falls... elders are going to fall, that is this their job. My Mom had a serious fall while she still lived at home with Dad, had a traumatic head injury and there was nothing that doctor could do to correct the damage that was done. Then Mom spent her remaining three months in long-term-care where she continued to keep falling. Since I had studied up on this injury, I knew this would happen. The long-term-care couldn't tie Mom into her bed or into her chair, so there wasn't much anyone could do except wait it out.
Watch TV shows such as "Who Wants to be a Millionaire" where you can answer questions. It makes you feel good when you get the right answer. Or get back into a hobby you use to enjoy. Mine was politics, so there is a lot of material for me to get into :P
Some of the things you describe aren't unusual for post-caregiving; it does take a while to segue back into a less demanding lifestyle. But the more you worry about it, the more you're going to begin believing that your worries are coming true. Perhaps they are; perhaps they aren't.
If you start worrying again, turn on the Weather Channel and think about what you'd have to do if you lived in Florida - that's really something to worry about. Focus on other people's misfortunes and how you can help - it takes your mind off your own issues.
It really does help to get more balanced into your life.