She is only 54 she is still young in my opinion for this to be happening. She starting to forget a lot of things. Things she would cook she has forgotten how to cook certain things to the point she doesn’t look like she used to. She also the same questions over and over. She can’t explain herself properly and she forgets her words. If she has a conversation with someone as soon as the conversation is over, she is more than likely going to forget what was said. She seems to be in panic mode a lot. She still works as of now, but I don’t know if she is going to be able to continue because she is a cashier. She can still drive and everything. She has had a lot of stressful events in her life, and she doesn’t deal with life situations very well and I’m not sure if those situations could have caused this. Sometimes she does okay, and you would think everything is going to be fine then other times it’s like she is getting worse. She has a 15-year-old son and today he had a dentist appointment. She didn’t even remember what the dentist said about his teeth and future appointments, and I had to call the myself to get the information. I also had to call and make the appointment because she can’t use her words or find the right words. I’m worried because I don’t know what life is going to be like for her 6 months to a year from now. The doctors did a MRI of her brain back in November but she has not had a follow up appointment yet she had one on February 12 but they said they had to reschedule. I’m going to call her doctors myself to setup an appointment. I’m concerned is there something that can be done to give her a better quality of life or at least manage the symptoms because she is not that old? This is really stressing me I’m not ready to lose her mentally. A lot of times I must explain things to her over and over and over and she still does not understand, and she gets mad with me. It’s like she is still herself, but she is not herself if that makes sense. The other night she asked her 15-year-old son did he want some food and I told her he had already eaten and before the night was over, she had asked this same question 3 or 4 times and this is something she does at times repeat questions over and over. Is there any hope or is this going to be lifelong situation?
But if that checks out fine, then it is very possible that your mother has what is called early onset Alzheimer's, and sadly there is absolutely nothing at this point and time that will stop it or slow it down.
And the sad thing about early onset Alzheimer's is that it can go on for 20+ years, so I would suggest that you have your mother get all her legal ducks in a row,( i.e. POA's, Will, MOST or POLST forms etc.)
A man in my caregivers support group, lost his wife this past July, and she had early onset Alzheimer's for 21 years. She was diagnosed in her late 50's.
Make sure that her doctor(neurologist)is made aware of everything that is going on with her, even if you have to contact them via the patient portal or by handing the nurse a note prior to her appointment so you don't have to talk about her in front of her.
And if diagnosed with Alzheimer's, please DO NOT let her continue to drive and put all those innocent people on the road in harms way of a woman driving with a demented brain. God forbid she hit and kill or seriously injure someone. If the police found out that she was diagnosed with Alzheimer's, she could literally lose everything if a lawsuit were to be filed against her.
You are in for a very long and hard road if in fact your mother has Alzheimer's, and my heart goes out to you and your family. Please educate yourself as much as you can about the disease so you will be better prepared for what lies ahead.
This is really a situation for medical care.
You may need to help her to do this, given how she is unable to manage things right now. Like funkygrandma59 suggested, she could have a UTI, a thyroid problem, vitamin deficiency, dehydration, diabetes, stroke, tumor, etc. All these can create dementia-like symptoms and are mostly treatable. Not being able to find the right words or apply them properly is called aphasia, and can be caused by TIAs.
If your Mom takes prescription medications (think for thyroid, opioids for pain, sleeping pills, depression meds) is it possible she is under- or over-medicating herself? Check her medicine cabinet and count pills, since she may not be remembering if and when she took them.
Dementia is usually diagnosed by discounting all other causes. Alzheimers is a form of dementia that one can get very early in life (my friend's Mom was diagnosed at 58, which mean she had it long before her symptoms were undeniable). A neurologist can do a brain scan to see changes in her brain, but I would start with her primary physician to discount all other possibilities.
You need to actually be in her exam room with her to take notes and give her doctor accurate answers to the questions they will ask her. At that clinic, ask for the HIPAA Medical Representative form and write your name in and have her sign it. This way her medical team can legally discuss her private medical information with you without her having to be present or give permission. If she's forgetful, this will be critical -- they won't talk to you otherwise, unless she's present.
And yes, your Mom needs to get her legal ducks in a row now while she still can if it turns out she does have ALZ. There is a drug called Aricept that has shown some effectiveness in slowing down the progress of ALZ but it only works for a short time and doesn't always work for everyone.
"It's like she is still herself but she is not herself" makes perfect sense to me. My husband has dementia. He seems like the same person, but not really anymore. There are times when he's almost his old self and able to have a conversation. Other times, that's impossible, and that's becoming a lot more frequent. He can't work, can't drive.
Dementia caregivers do worry about how the disease will be like in the future. What will it look like this time next year? Cause last year it was not as bad, does that mean there will be drastic changes this year? No one knows. No one, until it has progressed to a severity that they're totally incapacitated.
Of course until you know what's going on, the behaviors may be treatable. If you're not satisfied with the doctors seeing her, get a second opinion. Especially if you're in a rural area.
Keep us updated. There is a lot of great advice here.
This could be a panic/anxiety disorder or some sort of mental illness, but you are correct that it sounds most like some dementia, and it would be, if so, a very very early onset.
You are going to need a neuro-psyc evaluation. This is beyond a normal regular MD, but that regular MD is where you need to start to urine testing and blood panel.
I agree with others to have all medications and supplements listed for the MD.
I hope you will update us after her evaluation. And I surely do wish you the best of luck.
The end of Alzheimer’s by Dale Bredesen
It sounds like dementia, but people on this forum cannot diagnose her. Get to a Dr. so you know. Once you know what the diagnosis is, then get her finances in order (see an elder care attorney, just as Dr must diagnose, an elder care arrives can advise on finances, get you POA, guardian for your 15 yr old brother, etc). Yes, even though she is not “elderly” that’s the right attorney. Also, once you have diagnosis, and know where she stands financially, then you can start making care arrangements, whether in home or assisted living or
whatever. And care for your younger brother too.
Lots to digest. Just start with diagnosis. Go with her to appt so she remembers, and you know what the Dr is saying.
To answer your question, if it is dementia, there’s no getting better. It will be lifelong for your entire family to cope with. Your mom is probably scared and rightfully so. Please find out what you are dealing with.
There are other conditions that can cause some of the same symptoms as dementia.
The next VERY important thing to do is to consult with an Elder Care Attorney. (I know mom is not "elder" but the need is there)
There are a LOT of things that need to be done so that the family is protected. Since mom is not of Medicare age there might be problems down the road.
Someone is going to have to be the one to make decisions for her and someone will have to care for her child(ren) if there is no husband / father in the picture.
Once the brain has been damaged rarely will there be a reversal. If the condition that has caused damage is corrected the brain may be able to compensate, relearn and create new pathways. That will not happen if it is some form of dementia.
There are medications that can slow the progression. I have heard of a new infusion that is very promising. If there are any clinical trials in your area it might be worth checking them out. Contact the Alzheimer's Association the 24/7 help line is 800-272-3900
I hope your mom has you listed on her HIPAA forms so that you can get information. You can give info but if you are not listed they can not tell you anything about her condition.
Has she gone through menopause yet?
I know that sounds insane - and your description sounds like quite a bit more - but it's worth looking into if she has not yet gone through it.
I actually scheduled an appointment to talk to my doctor about early onset dementia when I was about 47. I honestly thought I was losing my mind. I couldn't remember if I was coming or going most days. I forgot words - I looked at DH one day and told him to "hand me the sharp, pointy thing that you write with" because I couldn't remember the word pencil. I had to cancel a work meeting one day because I could not remember the leader code for my bridgeline- that I used nearly every single day, multiple times, for years. DH found the milk in the pantry, the apples in the freezer, the soup cans in the fridge after a grocery trip one day.
I am not saying this is what is going on with your mom - regardless it necessitates a visit to the doctor.
When I went for my appointment I described what was happening and he asked me if we had checked my hormones. Quick test and it was very clear I was in menopause.
She could potentially be in early on set, she could be having other panic disorders, she could have anything going on realistically at 54.
Wishing you the best.
The first thing is diagnosis.
This could be anything from Anxiety with panic disorder to a glioblastoma of the brain.
Time to insist she see an MD.
I told my brother a POA let people know he gives me permission to do things for like banking, getting him to doctors and financial and health decisions. Get POA as soon as possible—even before the first doctors’s appointment—for health and finances. You’re going to be the one driving the bus now and POA will make life far easier for everyone everywhere—doctors, etc.
Go to her website.
purchase 1-2 of her books.
Do her webinars (as i did for 1-1/5 years)
Educating yourself on what dementia is - and how to communicate / interact with a person inflicted will help you a lot. it is very sad that your mom is going through this at such a young age. my heart goes out to you.
Remember to take care of yourself while managing this challenge.
Be kind and compassionate. (not that you aren't already)
Dealing with dementia is learning a new language (communication)
Depends on situation and brain changes:
She may get 'mad' at you / frustrated / confused. This is not personal towards you, it is how her brain is changing - and the confusion (and fear) that brings up.
Remember that she still FEELS a lot and responds to smiles, kindness, respect, touch. Be aware of your tone of voice (soft), make eye contact. You can learn a lot of this 'compassionate' behavior on Teepa's website. She's a wealth of information (as are her You Tubes).
Tell her you love her.
Gena / Touch Matters
However you proceed, it may become important someone accompanies her to appointments. I learned with my husband that he only knew how he felt on the inside and I only knew how he looked and acted on the outside. We both learned new things hearing how the other answered questions because neither of us were wrong. It often takes both views to give a provider the complete picture to make a true diagnosis... especially when symptoms seem to come and go.
If, after a physical work-up is completed, her primary provider should then refer her to a neurologist who could then look for possible causes of memory loss or dementia. There are many types of dementia and depending on the type, certain treatments or medications can be helpful. Although a cure may not be possible with dementia, there are treatments that can improve her function and lifestyle.
You can help on this by doing a bullet point type of listing of specific items that are “disconnects”. You want to try to get this done asap for a lot of reasons and there’s 1 biggie that probably hasn’t been considered: if she is able to get thru SSDI and get declared disabled and her now 15 year old is still under age 19 and still in High School at the time, he can be able to get for himself up to 50% of your moms rate via SS dependent child support system. The amount will be based on moms own SSA and it’s usually a % of hers.
For those older parents getting SSA retirement income that still have dependents, it’s 50% of their now retired parent who is drawing SS retirement income. & it too will pay till they turn 19 pr graduate from High School whichever occurs first. The dependent of one on SSDI is similar. Getting this $ will make a difference as she will not be working, and it will be $ to pay for things he needs as the $ can only be used for his needs. It will not affect her own SSDI payout.
fwiw my guess is she has primary progressive aphasia. That “at a loss for words” and the complete disconnect in doing what was once easy step-by-step activities like following the sequence on a recipe or doing laundry now a causes them to freeze up or total befuddlement. To be in your 50s and get aphasia happens. Aphasia is not dementia but a different type of brain disorder.
Is It Really Dementia?
There currently is no cure for most types of dementia. However, certain types of dementia, and certain disorders that resemble dementia in their symptoms, are treatable. It is important to seek medical diagnosis as soon as possible, since many of these conditions, if left untreated, can progress to the point of no return.
Pseudodementia
Pseudodementia is not dementia, in that it is not due to neurological degeneration. Rather, it has its roots in psychiatric disorders that have symptoms similar to dementia. The term “pseudodementia” is often used as a descriptive term for the symptoms associated with depression and other mood-related disorders, especially in advanced age. Unlike dementia, in which the course of the illness is progressive, pseudodementia is potentially reversible by treatment.
· People with pseudodementia are usually fearful of their declining cognitive function, while people with dementia tend to be less concerned about it and may even deny that they have a problem.
· A person with Alzheimer’s disease usually has short-term memory problems, while in pseudodementia, usually both short- and long-term memory are impaired.
· Persons with pseudodementia are less cooperative with their doctors and tend to score better on psychiatric tests than expected. In contrast, persons with dementia tend to be more cooperative with their doctors and score lower than expected.
· A patient with pseudodementia is more likely to answer “I don’t know” to questions in cognitive tests administered by a doctor.
· Compared to patients with dementia, patients with pseudodementia are better able to focus and pay attention, and rely less on their partners in answering their doctor’s questions.
· Many patients with pseudodementia complain about memory loss, but patients with dementia usually do not have this complaint due to their lack of awareness of their impairment.
I am sorry this is happening to your mother. There are very insightful and practical suggestions here.
I personally think it might be helpful for your mother to see a Cardiologist and Neurologist to rule out transient ischemic events that could also cause memory problems. I wish you the very best.