It hurts me to write this!! I know that none of you are doctors but I just need some advice. Please leave the criticism. Ok so last year around August I noticed some things happening with my mother. I noticed she had anxiety and was panicky. She sent someone a text and it didn’t make sense. She came home from work and went to sleep when she woke up she said she missed work and asked what time it was. She eventually started crying and the next morning she didn’t remember it. There was also another incident where a cousin was explaining to her what time he was going to pick her up to go to the football game and she didn’t understand what he was saying. Now after these two episodes she went back to normal. Eventually, she started having diarrhea and was going to the bathroom 4 to 5 times in the mornings, she started having abdominal pains, lack of appetite, and weight loss and the confusion got even worse. She would say that she was tired even on her days off from work. Turns out she had an h pylori infection. She took antibiotics the diarrhea and abdominal pains went away. They say that H Pylori can cause absorption problems and she became chronic anemia and she is on iron medication. She had a MRI in November then the doctor had some insurance problems so I wasn’t able to see him and the primary doctor made appointment with another neurologist. Maybe it’s me but these doctors are not helping!! This neurologist won’t stay in the room long less than ten minutes. Says she has dementia but it’s mild performed an EEG. The nurse called says EEG was abnormal and goes to his office he says it’s nothing to be concerned about. Wants to do a long term EEG at home. My mother was hysterical as she couldn’t sit in one place for that long to do the EEG so we had to cut it short and he says it came back normal. We saw him again a month later she was different as things had got worse. I asks some questions he says unless it’s an infection it won’t get better and he says let him study it but what exactly is he studying???He writes prescriptions and that’s it does not explain anything I need to do. A month later she has an actual seizure when she has never had one before. MRI does not show anything. Afterwards she started having real bad headaches in the mornings that wouldn’t go away with regular medication. That next month she had another seizure and was put on seizure medication and it helps with the headaches but she still has headaches sometimes. Neurologist didn’t explain the headaches or seizures just prescribed medication and no additional testing. The primary doctor recommended that I go back to the other neurologist as the insurance issue had been solved. This doctor was very rude with no bedside manner but I have to stick with him because he is a big doctor and he can do more for her than the other doctors. However, I did see another neurologist today because it’s about yo be Holiday time and I just want someone that will listen and help. He tells me I have two other good doctors and why was I there. First they are not good doctors because it has been 7 months and no one advised me on what I need to do how does a doctor speak for other doctors when they are not even a patient. So this doctor has his nurse perform a 15 minute test where she asking her to perform some tasks and asks questions. The doctor comes back in and says she has Alzheimer’s and it is progressing rapidly to enjoy the time I have left with her because eventually she may not be able to swallow food. Says the seizures are caused by the Alzheimer’s and that she is going to need a caregiver. He asks about her parents. Her dad is healthy and in his 70s her mom died in her 50s from ovarian cancer and he says if her mom had lived longer she could have had it but no one else in the family has had Dementia or Alzheimer’s. He says an MRI wouldn’t show it but a Pet Scan would. He said he wouldn’t waste time getting the Pet scan. I’m lost for words!!!
https://www.alzheimers.org.uk/blog/what-link-between-seizures-and-dementia#:~:text=It%20quickly%20became%20clear%20that,could%20have%20been%20epileptic%20seizures.
Dementia is usually most accurately diagnosed by discounting all other health/medical possibilities. Your Mom was having more than 1 health issue at a time, so it was tricky to sort through what was happening.
It would help us to give you best guidance if you could provide more information, like:
What state/county does your Mom live in?
Does your Mom live alone or with someone?
Does she take any medications daily/ongoing for any health issues (this is connected to her living arrangement, since if she is living by herself and having memory problems it is highly likely she is not taking her meds properly, or even at all so requires close oversight).
If her primary doctor has done testing/treatment for all other possible physical health problems (like UTI, diabetes, HBP, thyroid, vitamin deficiency, etc) then, if the neurologist did the proper scans/diagnostics and saw signs of dementia/ALZ there is really nothing to be done about this diagnosis except to provide the proper care and protections for your Mom. She is so young (my friend's Mom was 58 at the time of her diagnosis). Others get it even younger.
Help your Mom get her legal ducks in a row, If she's in the US she will need to assign a PoA to legally manage her affairs and make decisions in her best interests when she can no longer do so. She should be encouraged to create a Living Will (Advance Healthcare Directive or POLST) and a Last Will.
Since it seems she already has a formal diagnosis don't let this deter you from taking her to an elder law attorney. The attorney will privately interview her for legal capacity (plus make sure she isn't being coerced into creating the documents). The bar is low for legal capacity so don't make any assumptions, just make the appointment and encourage her to go.
This forum is an excellent source of support and information, so -- use it as much as you need.
I wish you and her all the best that is possible and peace in your hearts on this journey.
And yes, eventually your mom will not be able to live by herself, so it's best to get her ducks in row now with her care and legal paperwork such as will, POA's, and POLST or MOST forms all filled out before she gets too far along for any of it to be legal.
Take some deep breaths and take just one day at a time. You're going to be ok.
Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with your mom. Alz.org is a wonderful resource with an 800 phone number to call.
I used to work in a Memory Care Assisted Living facility where we housed a few female residents in their late 50s and early 60s who had advanced AD or dementia. It's occurring more and more frequently these days, where younger folks are being diagnosed with early onset illness.
I'm so sorry for your situation. These types of diagnoses are very hard to process, I know. Wishing you strength and patience as you navigate your way thru this difficult time.
Your first step should be getting the seizures under control. Speaking from personal experience, you can be mentally “out of it” for multiple days after having a tonic clinic (grand mal) seizure. Even a absence (petit mal) seizure where one does not lose consciousness can leave you very disoriented and confused for multiple hours or more.
You also need to prevent her from driving. Check the laws if your state/province to see when she can drive again. There is usually a seizure free period if multiple months required.
I always got a very specific type of headache after a seizure. The best way I can describe it was a dull pain when I held my head still but an intense pain with nausea when I moved it.
I had the absence seizures as a kid and was misdiagnosed with all kinds of things until I finally had a tonic clonic and was correctly diagnosed with epilepsy.
I am so dreadfully sorry for this dire diagnosis.
Let me start by saying I am an old (82) retired RN. When I started my nursing career there was no diagnosing Alzheimer's, FTD, Lewy's, vascular, and the many other kinds of dementia. There was ONLY "senility". We have come a long way in some ways, because our more sophisticated diagnostics can tell us so much more, and more quickly.
HOWEVER the sad truth is that we are only beginning. We STILL rely for a DEFINITIVE diagnosis, finally, on autopsy after death.
That your Mom had to deal with H Pylori amidst all this is horrible, but unrelated to her dementia.
YOU, Denisha, did it all right. You followed up and you followed up and you followed up. ALL of the tests have been done.
And now, to the best of mankind's ability to diagnose these things, the answers are in.
Do know that the seizures may have been the final symptom that caused certainty--they are common to Alzheimer's.
There is little you can do now but what you were advised to do. Enjoy the time you have and learn all you can. Watch Teepa Snow videos; where you will see mirrors what your mom goes through. Google them online. Read all you can about this disease.
Sadly your mother apparently has what is called Early Onset Alzheimer's. It often progresses much more dramatically and much more quickly than later onset.
I am so horribly sorry. You will now stand witness to something that is devastating for families. And your mother will go through this devastation firsthand. There is really no way around it. When my brother was told he has "probable early onset Lewy's by symptoms" he learned what was coming for him. He said he was sad to know that and hoped to die before it could "get him" and rob him of everything. And he did, to his and my relief, die of sepsis from a small wound 1 1/2 years later before most of his mind was lost. Meanwhile we explored together his disease, and spoke so much about how we saw the world so differently. Our ability to talk about it kept its terror from his door more than I can say. We were lucky.
There's so little I can say to you that can be of the slightest help to you. Do go to Alz.org for help, for advice. There are also groups on Facebook.
My heart goes out to you. This is devastating.
You need a second opinion! You need to put in a grievance to the insurance company and tell them you need a new doctor! I had a problem with my daddy getting his cataracts done it took me six months! I was on the phone with Kansas, Florida, New York, customer services - I finally put in a grievance and within two weeks we were in the hospital having it done. Know that I have said a prayer for you and your family. Hugs