Hello,
I'm wondering if people on the forum can share experiences particularly on early signs of dementia.
I have no experience of it other than, reading some internet medical articles. All information seems to point to short-term memory loss being a main factor.
How did you differentiate short-term memory loss from forgetfulness? Is it the same thing?
What did you start noticing before it got to a stage where you thought you needed to talk to a doctor?
How did you discuss the situation with your loved one? About going to a doctor, was is hard? Did it backfire?
Does waking up late in the day any indicator?
Some medical articles talk about hearing problems and their connection to dementia. Do people on the forum think they are related?
How do you differentiate certain things from just getting old? And when do they start calling it dementia?
I feel like my mom is sound of mind when I'm talking to her, when she's doing things around the house, she still does these things herself, sews, gets dressed, and cooks. However, there are times where I feel she has lost sense of time. For example, if she's calling me from downstairs, she expects me to appear the moment she's called my name, not even waiting 5 secs before calling for me again.
When out shopping in unfamiliar places or stores with lots of aisles, I kind of feel like she needs to see me close by her; otherwise she looks a little lost.
There's other things like not completing one task before starting another, sometimes where the gas stove is involved. I don't know if this is just forgetfulness or anything to be concerned about, I've done silly things like this myself, I'm sure we all have. I was more worried on this particular occasion, where my mom did not smell anything burning or see the smoke coming out of the stove grill.
There are occasions where things get put somewhere and she does not remember where. So the house is turned upside down until we find it. It doesn't happen often.
At the present time I am putting all these incidents down to just getting older and forgetfulness, because as I'm getting older I'm forgetting a lot more than before. I guess the frequency of certain happenings plays a factor too.
To be honest, I'm clueless about signs to look for and was wondering if other folks could share some of these experiences, what you saw with your loved ones, when diagnosed with early stages of dementia and decide to seek some help from a doctor.
I understand this is a hard & sensitive topic, thanks to all.
Love & Peace.
Love & Peace.
It's a hard to see these changes in our loved one's. It's definitely hard to take in the changes.
I will certain watch for similar changes with my mom. The phone and TV remote are things my mom regularly uses, so it will be more obvious if things change with these, but I will feel very sad at that stage too.
I didn't realize a stoke would be associated with dementia, but I understand the connection because it affects the artery. I feel for your situation. I wish you much support and strength as you cope with things going forward.
I have found the support on this forum very helpful, with responses such as yours.
Love & Peace.
Having read some other answers there seems to be an commonality in people not thinking much of the forgetfulness, until something happens that completely throws you. Something you know your loved one has done for years over and over again and then suddenly they are unable to remember that particular thing or how to do a particular activity, I guess that's when it really sinks in.
I read that dementia has various forms. Different places of the mind that are affected. My mom can only hear out of one ear, and her hearing has declined even more, what worries me is that some research has shown a link to between hearing & dementia. I keep asking her to wear her hearing aid, but I think she find it uncomfortable. It's hard to know what the person wearing the hearing aid is experiencing when they wear them, but I guess it must be some irritating sounds of a certain type, so she only wears them for things like the TV.
((Hugs)) For strength and coping through these times. I wish you support; through this forum and through those close to you.
Thank you once again for sharing, your support and advice.
Love & Peace.
My husband was first diagnosed with MCI (mild cognitive impairment). He was always a bit of a scatter brain. His mother had dementia and it can run in families. He started getting worse and was having trouble at work. Previous to his MCI diagnosis, he’d come home and tell me he didn’t like his new boss and couldn’t “read” him. That was odd because he’d never said things like that before. Well, he lost his job a few months later. At that point, we both knew something was going on. He willingly went to a neurologist (another sign something was very wrong, because he wasn’t one to see Drs). That’s when he got the MCI diagnosis.
The neurologist said lay off the booze (it wasn’t that much, but it’s better not to have any). He said MCI doesn’t necessarily get worse, but with his mother having dementia, it’s a possibility.
A year later, he was diagnosed by a second neurologist with Alzheimer’s. He’s seen a third neurologist for another opinion, and MRI and got same diagnosis.
We are 2 yrs in. He no longer drives. He’s in an on and off state of confusion. A bit worse, but not too bad. He wants to help me around the hose, it it’s so frustrating because he gets confused so easily. He can longer handle money or pay bills. Needs help picking out clothes. Supervision when doing most things. But he has a good disposition for the most part.
Yes, there gets to be a difficulty understanding time. Yes, my husband was (is) increasingly needy and doesn’t want me far. We do everything together now. Do you have to tell her the same thing many times? Does she have trouble with concepts or reasoning? Have you looked over her finances…is everything being paid correctly? How’s the house…is it clean and orderly (or at least is it as it usually is)? How is she? Dressed appropriately for the weather? Clean? Again, you have to gauge how she is now, with how she used to be? Does she keep up with what’s going on around her? What day/date etc?
Yes, my husband can be unaware of what’s around him…he could leave a pan on the stove unattended. We only cook together (or just me mostly). He’s more clumsy than he used to be.
Your mom sounds like she’s having some issues. Can you suggest she see a Dr? Could you go with her? The first step is evaluation.
There are many things to be done is she’s having symptoms of dementia. First see a Dr. If she indeed has dementia, get power of attorney (durable and medical). Sort it out with your family - do you have any siblings or family members who can help? This in itself can dredge up a whole world if issues.
There are many resources…Alz.org is one. They also have a 24/7 hotline to call if nec. Dementia.com is another. There are online or in person support groups too for caregivers.
Yes, we all can forget stuff, and do dumb stuff. When she becomes oblivious to it, that’s a problem. When it happens more often then not, that’s a problem.
When she doesn’t do things she’s always done, said or thought, keep an eye out because that’s a problem.
Theres a ton of books and online resources. However you need an actual diagnosis first. If she doesn’t want to see a Dr, you may want to discuss with your own Dr (or hers) as to best way to proceed. You can also speak with a social worker if you think your mom is unsafe, a social worker can also advise you. Call the Alz.org number (go to website) they will also have some pointers.
Again, there’s lots to do, but you really need to start with her getting evaluated.
Yes, as many have said here…trust your intuition and knowledge of your mom…you know when something’s not right.
The things I noticed with my mom early on were easy to attribute to something else. Losing track of the days of the week (well, if one doesn’t work, that can be easy to do). Being late on a bill payment (which mortified her, but I do that when I’m overloaded). Failing to do daily activities: skipping a meal (or two), not getting the mail, running out of a med or a food staple. Losing a certain clarity with abstract matters, ie not fully comprehending something I had said, especially something humorous or double entendred. You develop a linguistic cadence with a loved one, and you notice when it’s off. She just wasn’t grasping things she used to understand, but it was subtle. Probably the most emphatic change was the way she was starting to argue with me over seemingly little things. We had always had a little natural mother-daughter tension and bickered occasionally, but this was a mercurial anger that would come on without notice and ruin an otherwise good day. It would often happen during the latter part of the day, whether we were together or it was via text or phone call. The next morning she was over it. But everything was, and still is, very changeable, and we can have conversations now where I feel like nothing has changed at all and she is just as sharp as she ever was. It’s unpredictable in its size and scope, and at least in my mother’s case, she is acutely aware of the changes and is very stressed by it as she feels her control slipping away. I know this because she has articulated it to me, but it’s occurring to me now that some seniors may feel the exact same loss of control and fear over it but not be able to verbalize it. In that case, you need to be a beat ahead in recognizing when your senior is getting overwhelmed.
I want to offer a caveat, and this may not affect many people but if it helps a few it’s worth mentioning. My mother took a very sudden turn in her last month of living alone. Seemingly overnight, she became completely confused and unable to do the simplest task. She was putting a nightgown over her clothes, unable to feed herself, didn’t know what to do when she was woke up in the am. People on this same board were quick to say that dementia doesn’t come on that way. We went to the ER and had a full battery of tests, all of which produced negative results. Significantly, she was negative for a UTI, which can frequently cause these same symptoms. They wanted to hold her overnight and continue tests, but my gut told me that would do her in. She has always begged me not to let her end up in the hospital, and I wanted to honor that and bring her home that evening. They gave her an antibiotic anyway, and I took her home with me since she could no longer use her phone nor care for herself properly. She lived with me for 3 weeks while I got an ALF line up. I made her 3 meals a day and administered her meds (digoxin, Xarelto, and levothyroxine). Within several days, she began speaking coherently again, dressing herself, and demonstrating normal behaviors and mental function. I was blown away by this. It’s possible the antibiotic knocked down something the ER didn’t catch, but my suspicion was that dehydration and malnutrition (and possibly erratic medication) all contributed to a greatly incapacitated state. Had I not brought her home for those three weeks and discovered this, it’s possible she would have ended up in either the hospital or a nursing home and on a batch of new meds when it was easily addressed by proper nutrition. She does have early stage dementia, and is very forgetful and sometimes unreasonable, but she functions independently and was a perfect candidate for AL.
What I noticed first myself was not memory but personality changes. She became disinterested in what her kids and grandkids were up to, which was not normal for her. When we were together there was an emotional distance that was hurtful to me, before I knew what was going on. Also, she had more anxiety. Got really flustered and acted like small things in all of our lives were just too much for her to handle, to the point where it was hard to talk to her and share things anymore. For maybe two or three years she was like this before I understood why.
Also! Driving! Very very slow driving when I got in a car with her. It scared me. She was 70 when this started happening.
I am often asked when I noticed, and, because of her difficult personality, I really don’t know. When she was finally assessed during a crisis, she was deemed mid-stage.
Here are, in hindsight, my red flags.
She began isolating herself from friends and extended family, while inserting herself more into my life. Then complaining that she was lonely. She’d been very social. (Not depression - different - already on meds for that.)
She was getting ready to visit her SIL and complained that she’d been trying to organize her week’s pills for over 3 hours. Took me 2 minutes. She had dumped them out into a pile but couldn’t process putting one in each compartment.
She was almost deaf in the early to mid stage. And her deafness was distractible. She fought tooth and nail against having her hearing checked. BTW, she started hearing again as her dementia advanced. In hindsight, by pretending she was nearly deaf, I had to answer such questions as her date of birth, address, etc, which she had forgotten.
Obsessive, repetitive talk about the same thing, always such that she had been wronged and was a victim. Incidents from 50+ years ago.
She started reporting that her house was robbed daily. Even when we found misplaced items she concocted elaborate stories about how robbers had come in and rearranged her things so that when they returned to steal them, they’d know where they were. She developed conspiracy theories for so many things. Like she knew, just knew that today was Friday, Dec. 30 but the newspaper company was scamming people by delivering old newspapers with the date of Thursday Dec. 22. Tremendously complicated, illogical mental gymnastics to explain away anything that she didn’t understand. When presented with proof or facts, she’d double-down. That behaviour was scary and exhausting for us. She was so combative.
When I suggested talking with her doctor she blew that she was fine and everyone was gaslighting her, including me.
I could tell you about all the times she paid for an envelope, paper and stamp to tell the credit card company that she would not pay the 1 cent of interest on her account. But that was NOT unusual behaviour.
It’s one thing to forget which purse you used last in order to locate your keys. It’s another thing to hide your keys in the freezer, under the bathroom sink or inside the grandfather clock.
Trust your instincts. Because the changes can be subtle, incremental, they can sneak up on you. May I suggest keeping a diary so you can compare your observations without second guessing your own recollections.
Looking back and connecting the dots, I saw it at a huge party we held for her extended family. She was an elegant woman, who in her younger years would make dinner for six on Fridays just for something to do. When we held the huge party at a remote site, with catering and entertainment, I commented to myself that she showed up as the best dressed homeless person I knew. After the diagnosis. I now know that was when it was obvious. The diagnosis did not occur for another year and a half. In the interim, she had a car wreck, incontinence, and began having trouble walking.
In hindsight, the biggest indicator of dementia was belligerence. Nothing was good enough, there was no softness to her, she was harsh, critical and the littlest thing set her off. Of course, the harshness and criticality would set me off. It became a downward spiral. I wish I had learned early to purposely soften myself. I also wish I had learned earlier how to redirect her thoughts and not answer her questions or try to reason with logic. When people with dementia get a thought in their heads it stays there. They need to be redirected, not answered.
The most common symptom of Alzheimer's is difficultly remembering things , particularly new information, such as an appointment you have made. While people who are aging normally may forget things as well, they will typically remember them later -- in other words, you remember that you forgot.
What is the earliest symptom that indicates dementia?
The 10 warning signs of dementia
Sign 1: Memory loss that affects day-to-day abilities. ...
Sign 2: Difficulty performing familiar tasks. ...
Sign 3: Problems with language. ...
Sign 4: Disorientation to time and place. ...
Sign 5: Impaired judgment. ...
Sign 6: Problems with abstract thinking. ...
Sign 7: Misplacing things.
(I have some of these... as many of us do in our 70s (or so I believe). The best I can do is limit stressors (meditate, exercise) and eat healthy, keep my weight in a health range. And, develop / keep my social relationships for emotional and psychological support). See below:
How to avoid dementia? - This means you can help reduce risk of dementia by:
eating a healthy, balanced diet.
maintaining a healthy weight.
exercising regularly.
keeping alcohol within recommended limits.
stopping smoking.
keeping your blood pressure at a healthy level.
Gena / Touch Matters
He is diagnosed with Frontal Temporal Dementia. I've learned a lot about it too.
Hang around this forum, lots of people here have lots of very, very useful information to offer. Get all the testing you can for your Mom. Neurologist appointments are harder to get than hen's teeth. Do everything you can not to miss one, or you could be waiting 6 months to a year before another one is open. Once you know what type or mixed type of dementia your Mom has, drill down and find out more. Use reliable web sites, Alzheimers, Mayo Clinic, Sloan Kettering-their information is checked and fact based with the big name hospitals/organizations. Check your Mom's insurance, ask her doctor's office if you're not sure, if the insurance will cover a PET scan, quite useful and accurate for diagnosis of the brain, if the neurologist deems it important to get done.
Financial/legal planning is a must. A very hot topic here, again great information from lots of posters, which I've saved to use for later planning and fine tuning those plans.
This is not easy. This is not for everyone. Do not think you have to do this, if it becomes too much. Plenty of support on this forum with that, lots 'n lots of collective wisdom, about this.
Good luck and God bless!
You can also share your observations, concerns with Physician for input on how relevant these are to concern.
If there are safety concerns, these can be addressed.
but for the patient also. They know
something is changing but just can’t figure it out. And the bad part is there aren’t any really
good meds for this. And what they have only slows it down. But the progression is really fast.
I'm so sorry. You are brave and bold to share your experience and your pain. Sending you support and love.
he was very repetitive in his stories. They say that people with his style of dementia they get certain answers down pat and they do very well making it very hard to detect. Memory started going, and couldn’t remember paying bills and so he’d pay it multiple times, couldn’t remember details, could remember things from long ago but couldn’t remember a conversation older than 20 minutes. but even then the long-term memory started having problems and he changed the stories, then completely forgot why some things were the way were.
Mostly in the beginning it was being extremely repetitive. he was such a dear. ❤️
Regarding your question as to early signs of dementia in a LO, here is a prime example (in my opinion): A precursor to my late sister in law's Alzheimer's was that she was driving IN HER OWN NEIGHBORHOOD with two of her grandchildren in the back seat of her auto when she entered a clearly marked in red, 'DO NOT ENTER' one way highway. Fortunately other drivers noticed her error and alerted her to turn around, else it could have ended badly. The moral of this example was that she failed to recognize the traffic signage that is on a roadway for a reason; traffic designers have incorporated not only DO NOT ENTER signage, but additionally, they have printed it in RED.
"What to Do If You Suspect Someone Has Dementia"
Grace Styron
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Love & Peace.
Very concise and pertinent questions and you ask for only personal, not professional, opinions. I’m not sure there is a big difference between ‘old age’ forgetfulness and onset dementia. Maybe they walk hand in hand at the beginning. The first signs I saw were repeating the same stories/anecdotes in short order. Forgetfulness yes. But when persistent maybe some dementia. Some medications may also cause forgetfulness. Memory loss is when something or someone who was once familiar is no longer familiar. Memory cannot be jogged.
what I found with my mom is that if she couldn’t remember she just ‘filled in the blanks’ til it sounded feasible to her.
I think when people get older they do tend to feel, even if the ent admit it, safer with a familiar face close by. Not uncommon for them to get a little panicky if they don’t see you close by.
I also know that in the beginning they can turn it on or off how ever the situation suits them, which can be very disconcerting.
My mom was sharp until the very end but as she got physically weaker so did her mind. The only time we had a doctor involved was when she didn’t want to quit driving (at 89) and he was no help, said she was fine (grrr) so I think you will be the best judge and nothing Doc can do anyway. I think one of the hardest things for adult children to cope with is their own feelings about a parent who is becoming childlike. The role just is odd, especially if that parent was strong and vibrant.
And remember dementia doesn’t always lead to Alzheimer’s. That is a disease that can be tested for. Dementia/old age forgetfulness not.
Just use your sense of her and you’ll be fine.
❤️❤️Sabrina
He didn't pay attention to when bills were due or needed to be dealt with. It became more clear when my Mom couldn't get her Kindle to update her daily puzzles, and when I talked to Dad he said 'oh the cable (internet too) is out in the neighborhood, I'm sure they'll fix it.' When I did some investigating from afar online, the cable in the neighborhood was fine, he just hadn't paid the bill and they got shut off. The fact that he totally missed paying the bill was one thing, the fact that he didn't bother to really find out why things weren't working and didn't really care was totally something else.
He was primary caregiver for Mom who was in a wheelchair for a few years, and when she was there things were okay as she was sharp as a tack and would keep him on schedule and on track with things. I did notice him losing more patience with her when she had to tell him multiple times that it was time to eat.
When you think of dementia you think of forgetfulness yes, but there are other signs. His forgetfulness wasn't as bad as I had been looking for, it was the lack of caring about things and awareness of when things were happening. (Mum told him at one point that one of their favorite shows was coming on and his response was 'I don't care' - Totally unusual for him!
So stuff like that. And once she had to go to rehab then nursing home and wasn't there, things became very clear that he was having many more issues than I even realized.
I agree with everyone saying talk to the doctor. Very importantly, any tests they do many not give you a concrete answer, but it does establish a baseline so you can track changes as the years go on.
What really scared me is when I brought her home one day & she didn’t recognize her home. I spoke to her Dr & she told me it was sundowning.
People who didn’t see her on a regular basis thought she was just a little forgetful
In my mom’s younger days she was so sharp with numbers! Once she told her bank that they were off by 30 cents.
The bank credited her measly 3O cents to her account. I am not making fun of her. She valued every single cent because she lived through the depression.
Me? I would have said, 30 cents, so what? LOL 😆
My mom became like your mom and could no longer balance a check book. I suggested that she should get a debit card but she didn’t like the idea of using a debit card. I found that strange because she had a credit card.
I ended up doing all of the shopping for her because it became too much for her to handle. I missed her going with me. She missed being able to go out. It was sad that she couldn’t go anywhere except to the doctor.
Loss of spatial and direction awareness
Obsessively impulsive
Obsessively impatient
In general, it was the personality changes that the person kept trying to explain them away.
If these sorts of things are people's first experiences with a loved one with dementia. It is hard for the caregiver too, because we don't get educated in school about such things, no one tells us how to handle theses things.. we have live and find out.
Thank you for your answer.
Love & Peace.
Hugs 🤗
I might breakdown and cry when I start noticing the bigger memory lapses. It's hard when you've know a loved one to do do certain things for decades and then they can't any more. I don't know how I will handle this, I'm scared to be honest.
I can imagine how difficult it must have been for you, noticing these things. The parking spot & biopsy situations I think for you were conclusive for you, I know I would have been really sad at that stage.
I feel for what you have been through. I don't know your current situation but I wish you comfort, hope you have many loving people around you to support you.
Love & Peace.
In my case I was lucky as my brother, in my same state but at the opposite end of said state, talked to ME. About his balance. About his difficulties with a phone he thought not working that "everyone else" assured him WAS working. About some driving mistakes he would not have made earlier, finally about hallucinations he thought were dreams at first, and his balance. He truly wanted to talk, to find out, and while he said he wasn't happy to know he had probable early Lewy's dementia, he WAS happy to know the reasons he was seeing the world differently than he did before. He was "interested". He was lucky to die of another cause before his dementia became bad. I think this is rare.
I wish you good luck going forward and getting evaluations. There are so many KINDS of dementia, that it's important to be evaluated. You will have more control in knowing what manifestations you may observe going forward if your worst fears are true.
Before that I tried to tell him something was wrong and he should be checked. I told him it could be something like a brain tumor but he replied, if it was he would just die. Finally I made an appointment for a checkup but I sent the doctor a message about what was happening without my husband knowing. He diagnosed him with memory and behavioral problems but a few months later he diagnosed him with Altzheimers and prescribed Lexapro and Aricept and referred us to a Neurologist.
He never seemed to realize what was happening even though the doctor told him. I guess he immediately forgot. Once he told me the Neurologist just like to make you feel stupid. They ask things like who is the President, what day is it, what season. He wouldn't know. They would tell him 3 words and that they would ask him later, he sometimes might remember one thing but mostly he didn't. It just gets worse from there.
From what you said about your mother, she may be just forgetful. The one thing you said about being in stores and looking lost struck me more than putting something somewhere and not remembering where you put it. My husband would not know which direction to go to get out of a store if I wasn't with him. I misplace things myself. I sometimes can't think of names but then it comes to me. Is this a part of dementia or just normal aging. I hope it is normal aging because I don't want anyone to have to take care of me like I did my husband. He passed from pneumonia February 2, 2020 mainly because he wouldn't take any medicine and was. combative. He didn't even know me. It's a very terrible disease. I've been through it with my mom and my husband.
They do think being hard of hearing may be a factor. My husband was hard of hearing. If very many incidents happen with the stove, I'd be very cautious about leaving her alone. I'm not sure about not completing task before starting another. I guess it would depend on did she just see something that needed doing and get back to the task later or completely forget.
I wish you the best and hope that things work out for you that it isn't dementia or Altzheimers. I will tell you that you may have to lie if it means seeing a doctor or not. With my mom, she ask about my Dad and got very upset when I told her he was gone. After that I made excuses. You just agree with them or do what you have to do for their best interest. I hope this helps.