I need to share the news with someone...

It takes years, even decades, to reach the stage where there are symptoms of Alzheimers. In addition to whatever the doctor recommends, there are things that can be done to slow the progression of the disease. Good nutrition, certain supplements, being active (walks are good) , doing projects that keep the mind sharp (crossword & jigsaw puzzles) and most importantly a good sleep routine.

Stay Strong OP!

Sound weird that the neurologist would call OP and not the mother and then want to withhold a diagnosis from the patient. Sounds unprofessional.

I'm so sorry. 63 is so young. I don't know much about Alzheimers but I hope it progresses incredibly slowly and that the new medications they are creating work for her. I read today that medicare said once they are FDA approved they will be covered.

I am taking a class on brain health right now, no idea why, they offered it and so I signed up. They showed a chart of rates of men and women and dementia (trying to show how lifestyle choices could help). Women had dramatically higher risks and the chart showed that after age 87 women have an almost 100% risk of dementia. It was shocking.

^^Type weird. Type troll professional.

Have you tried valerian tea, honey?

That sucks, OP. No surgery coating it—just sucks. But you will grow to accept that it sucks and figure out a way to care for your mom.

For what it’s worth, I read once that dementia is much worse in the caregiver than in the patient. So take some solace in the fact that your mom might not suffer much.

Take care, hon.

I'm really sorry, OP. I'm going through this with my own Mom right now

It is really unfair. Maybe it could be posed to her that it was caught early so there is much that can be done to slow it down. It might not be entirely true but it sounds like your mom could use some optimism so if it is somehow possible to present it to her, after the shock, as an opportunity. I'm so sorry.

There's a lot of controversy about his approach, but look into the Dale Bredesen protocol (RECODE) and if you can afford one consider getting a Vielight red light therapy device. You want to get the Gamma (although getting the Duo Alpha + Gamma combination devices would be preferable). I tried to get my parents to do this when my mom was first diagnosed, but they've been very passive and resigned and reluctant to act, sticking to standard medical approaches which have done nothing, and things have really started to degrade recently

I am so sorry. My mother just turned 80 and is waiting for a neurology appointment. It is a three month wait, but would have been five without a fortuitous cancellation.

We know what the diagnosis will be. Most of the time she is fine, but can get very confused and distressed. She calls in the middle of the night, not knowing where she is or why no one is living with her. She sometimes thinks my brother is my dad, and is quite bitter that he leaves her for his girlfriend.

There are some new drugs, which may lead to breakthroughs in years to come. But be prepared for one of the hardest things you will face, which may last for a long time,

Thanks, everyone. I truly appreciate the support and advice. R11, three-to-five months is outrageous. I'm so sorry. We were lucky and got an appointment only two weeks after submitting a preliminary questionnaire.

I’m sorry OP, I wish you and your mom the best possible path. May I ask, what behavior led to the visit to the neurologist? I’m never quite sure if or when I should be concerned about my own mother.

Hugs to you and your mom.

I’m so sorry, OP.

OP, I'm so sorry. My hope is you won't have to handle this all on your own but will have help and support.

R4, the 100% risk for women over 87 seems overstated. The actual incidence (as opposed to risk) of diagnosed dementia in that group is not shockingly high. Is the class you're taking one of those deals where the presenters try to scare the daylights out of you so that you'll buy their astronomically priced vitamins or special foods or books?

I'm so sorry, OP.

R13, she's become increasingly forgetful. For example, she’ll tell or ask me the same thing repeatedly throughout the day, sometimes even within an hour or less. How was work? Your brother called me. I painted my fingernails. Again, again, and again. Usually, when I answer, she reacts like she's hearing my answer for the first time. It triggers no memory. Written instructions confuse and overwhelm her, so I try to walk her through them. She frequently loses things, and I wander the house trying to find them. She often accuses my father or me of moving or throwing things out. She's left on the stovetop burners, left the refrigerator door open overnight, and left on other appliances multiple times. She leaves things incomplete, like a kitchen cabinet door open and an empty cup on the kitchen counter. She forgot to serve the drink and walked off. She has a lot of trouble sleeping. She double-pays her bills. She becomes anxious and scared often. Now, I intervene to stop many of these behaviors. I also drive her everywhere because I'm afraid she’ll cause an accident. There’s more, but I think you get the point. Sometimes, we talk and laugh, and it's as though nothing’s wrong, but then something happens. It's sad.

Sorry to hear, OP. You mentioned your father, so he's still alive, obviously. How is his health?

He’s seven years older than my mom and still mentally sound. He has bad knees and hypertension and is a liver cancer survivor, but otherwise, he's in good health. I told him the diagnosis, and he agreed we shouldn't tell her for now. I'm single, and they both live with me. They're retired.

Well, that's a lot to deal with, OP. My grandma had dementia and would ask the same questions, over and over. She left the stove on, as well.

Just take things one day at a time. You sound like a good son. Keep posting here if it helps.

I'm sure there are lots of DLers who have been through the same or similar.

[quote] I'm so sorry. 63 is so young. I don't know much about Alzheimers but I hope it progresses incredibly slowly and that the new medications they are creating work for her. I read today that medicare said once they are FDA approved they will be covered.

A slow progression is misery -- mood swings, hallucinations, constant confusion, memory loss and diminishing ability to complete daily tasks. Hard on the victim and their caretaker. I would probably end my life if I got an Alzheimer's diagnosis.

R15 it’s through the teaching hospital in my city, but to be fair it was a graph so it certainly wasn’t precise, and I hope it’s wrong, It wasn’t great for either gender. So far we discussed diet, exercise, blood vessels, alcohol etc. What I got out of it is hypertension and blood sugar maintenance is key. I am a type 1 diabetic so it wasn’t encouraging for overall dementia risk.

[quote]Women had dramatically higher risks and the chart showed that after age 87 women have an almost 100% risk of dementia.

Surely the reason women have a dramatically higher risk is that they're still alive in extreme old age, and hardly any men are?

I'm sorry about your mother, OP. 63 is really young. I just copied this from the Mayo Clinic website:

[bold]Lecanemab[/bold] Another Alzheimer's medicine, lecanemab, has shown promise for people with mild Alzheimer's disease and mild cognitive impairment due to Alzheimer's disease. It could become available in 2023.

A phase 3 clinical trial found the medicine slowed cognitive decline in people with early Alzheimer's disease by 27%. Lecanemab works by preventing amyloid plaques in the brain from clumping. This was the largest study so far to look at whether clearing clumps of amyloid plaques from the brain can slow the disease.

Lecanemab is under review by the FDA. Another study is looking at how effective the medicine may be for people at risk of Alzheimer's disease, including people who have a close relative with the disease.

God. DL is slowly morphing into iVillage.

I’m so sorry OP. Sending you a hug ❤️

I helped care for my only aunt who had Alzheimer's disease. She was single, no kids and lived with my mother. Both were in their 80's when things got to the point where they needed help. From first diagnosis until her death my aunt lasted about 11 years. She was 73 when she started showing mild symptoms. At first it wasn't too bad. And that early stage lasted for several years. She was able to dress herself, bathe, eat, and even help with light chores. She washed dishes, set the table, etc.

One thing I did learn is that spending too much time alone is not good, and neither are disruptions to routines. My Aunt was able to hang in there because she lived with someone and had regular visits from cousins, friends, etc. and was made to feel part of every day family life. The early symptoms manifested themselves in confusion. Misplaced keys or purse. Church was a mile away, the grocery store was also nearby. But she started getting confused about which way to turn. At the grocery store she forgot how to handle money. She did simple mechanical things like help putting the groceries in bags, or helping to make the beds or fold laundry. She dusted and passed the vacuum. She was slender all her life and didn't like to eat things she said were "too sweet." She had a wonderful sense of humor.

Soothing music helped keep her calm. We played church music or classical, or sometimes old big band tunes. TV was cooking shows. Nothing fast paced or violent. Even the weather channel could be too much. As for disruptive routines, Mother had to go to the hospital for knee surgery. My cousin offered to have Aunt over for three days. Her house was very "busy." Her kids were teen agers who argued and fought all the time, there were barking dogs, and things were a mess.

When we picked up Auntie, she was "shell shocked." You could actually see the deficit in her behavior. She recovered some, but not all. As I was able to observe it over those years, it would seem like she was OK for a while, then she'd deteriorate a bit and hit a plateau. Deteriorate, then plateau. At first the cycle wasn't very dramatic at all. you'd have to be familiar to even notice. But as the disease progressed it became more obvious.

I guess everyone is different. In some people the disease progresses fast and in others it goes slowly. But the life cycle of someone diagnosed with it, is about 8-11 years or so I was told. That may have changed. My Aunt eventually had a massive stroke and died several days later. I think, for us the last 4 years were the most difficult. My mother got Dementia when she turned 90. She died 6 months later.

You needn't've shared this with us, OP, I'm just depressed now.

All the best to your mom, hopefully they find a cure for this beastly scourge soon.

OP, I'm glad you shared. One thing I learned from my personal experience is that you have to be aggressive about getting information and support. And find a support group for caregivers. The diagnosis is over whelming for family members. Getting informed is a life saver.

I'm so sorry, OP. I went through this with my Mom.

I'm glad you don't let her drive. My Mom took a wrong turn and ended up 90 minutes away in Philly after having a one-car accident. Someone who saw her car found my info and called me. We ended up having to put her in assisted living which is a lock down wing. It was terrible going to see her early on. She kept asking when she could go home. As the disease got worse, we would visit her and she would tell her friends we were her four kids. Fifteen minutes later, she couldn't remember our names. Eventually, it got so bad when we visited, she would ask how long we were going to stay. She only lasted a year in AL. She died at the age of 83.

This disease is the worst. You basically lose your loved one twice; once when they no longer remember you and again, when they die.

R27, respectfully, you “needn’t” have clicked on this thread. It’s completely your choice to expose your tender psyche. Are you British??

OP is at the beginning of a long struggle that will not get better. What is wrong with sharing that with people who have faced the same struggle?

R13 I think the behavior that led to the neurologist was exhibited in the appointment.

I leave stovetop burners on sometimes and I don’t have Alzheimer’s. Misplaced keys? Most people misplace their keys. Miss a medical appointment? My mom did that, she was very old. She didn’t have Alzheimer’s/dementia. be careful what you think, about this.

A 3 month wait for a neurologist is normal from what I've seen. And it's probably going to get worse as boomer neurologists retire. Just think -- a huge demographic is aged and getting dementia. I hope there are enough drs to handle it. So, don't be surprised by long waits for appts.

I'm sorry to hear that OP. I wish I had some good advice or better words for comfort. Your mom is still what if consider pretty young. I just hope you find good doctors and have quality time while you can with her.

I'm so sorry, OP. My 83 y.o. mother developed dementia and we put her in an independent living facility last December, right after Xmas. She has her own "studio apartment" and is able to go to the dining hall for two meals a day, which she loves because she was always very social. They have entertainment and card games and church on Sundays and even "happy hour" on Fridays where alcohol is served! They clean her place and give her fresh linens and have "excursions," although she never goes. My sister lives 45 minutes away and has been taking care of things that (what I call) "the Home" doesn't take care of, like parceling out my mother's medication for the week, buying her candy and "goodies," and picking out her outfits.

My mother is happier there than she has ever been in her entire life. In her now-childlike way, she even asked my sister, "Can I stay here forever?" My sister answered, "As long as you stay healthy!" So now my mother has an incentive to try to eat right and walk as much as she can (not much) so she can die in this place where she feels so at home.

Don't despair, OP. It may turn out better that you ever could have imagined.

OP, I’m so very sorry. My mother is 80 but had a stroke over a year ago and I’m afraid she has dementia even though she’s still passing tests at the neurologist.

She leaves stove burners on, doesn’t ignite them sometimes, and is exhibiting more pathological mental health issues. She acts a bit more borderline now.

It’s very hard watching the person you knew become someone else.

My heartfelt sympathy, OP. I know what you're going through, and it's very, very difficult. My strong independent mother passed six weeks ago at a couple weeks short of her 91st birthday and after a decade of slow degradation to the point of being unable to be alone for more than a few minutes. My sister bore the brunt of her care, but it took my brother, his wife, me and my husband to care for her, and it was simply a blessing when she passed as peacefully as possible after a bad fall.

While she's still capable, get a medical care directive, living will, power of attorney and a will in place (and it would be wise to do the same for your father because you never know and a fast-moving problem could wreak havoc). Good first step finding a neurologist, but you're also going to need a good GP with experience dealing with seniors and dementia. It's a bit late to look into long term care insurance (the premiums will be exorbitant) but it might be worth investigating given that she's only been diagnosed recently. The point is that the time to act and plan for her future is now while she can still make decisions and has the cognitive abilities to sign documents without challenge (although those challenges mostly come from family members, and you haven't mentioned siblings... but dad is still here and the responsibility for all of this falls legally on him and it doesn't sound like he's in too good of shape, either).

And finally, look out for yourself. You're going to need support, assistance and a plan. R7 is spot on; this disease is harder on the caregiver than the patient. I'm so sorry to dump all of this on you, but I can't tell you how much my brother and sister and I wish we'd had someone who'd been through it to offer some advice despite all of the work my mother had done to prepare for her retirement and end of life.

Good luck and take care.

R32 yes of course you're right, about how we all can be absent minded or experience brain fog for many reasons. But with an Alzheimer's patient it is very different, and they exhibit a pattern of behavior over a period of time. If you're interested, maybe spend a couple of hours in a memory care facility. It's not the same as being "absent minded" although in the earliest stages people do manifest similar behavior.

Try to find ways to bring joy to her days. As things progress, stay smiling and let her absorb your energy. Peace to you and your mom.

R22, R15 here. Many thanks for the additional detail. A teaching hospital seems like an eminently trustworthy source of information, so the risk estimate they cited is indeed frightening. You're smart to get informed.

To the poster above who mentioned Dr. Dale Bredesen, I have also been fascinated by his dietary and other lifestyle recommendations for preventing dementia and even improving its symptoms. The protocols he puts forward are very strict, though, and, for me at least, hard to adhere to. (No cookies!)

OP, I respect you so much for taking care of your parents. They sound like kind and lovely people, as do you. I hope you are able to maintain some semblance of normalcy in your own life and find time to do things that make you happy. Also hoping you will keep posting about how things are going. I'll be thinking of you and wishing you the best.

Feeling your pain OP. Mother is currently in a nursing home with dementia. She’s 86. Her drinking sped up the process too. At least once a week she calls me to come to take her home. And I’ll tell her I will take you home. If you can tell me what you have for breakfast this morning then she’ll stop and realize that she’s there for a reason sometimes she forgets and it’s getting worse. I don’t know how much time she has left but right now she’s safe and she takes her medicines, and she’s not on the street getting in trouble. I don’t speak to my brother because he has been no help with this at all so it’s pretty much me and her surviving Brother that visit her on a regular basis.

Thanks, R40. I'll keep you all posted. The next step is an MRI.