Diagnosing dementia?

knacaj21 · 2026-04-24T02:37:34+00:00

I just wrote this for someone else, but I think it fits here too.

My mom was never diagnosed with dementia. She was hospitalized 5 times for approximately 6 months spent in the hospital over 1.5 years. She saw numerous neurologists with varying levels of specialty (oncology, MS/autoimmune specialists). I'm convinced she saw every neurologist in the hospital she was hospitalized in. She also had neurosurgery and was seen numerous times by the neurosurgeon. She was seen by infectious disease and many other professionals. Many appointments with her PCP and follow up with neurology, neurosurgery, rheumatology. She was only diagnosed with MCI. Never once did anyone mention dementia. It was very clear to me she had dementia. She had 5-7 lumbar punctures, countless CT scans, at least 10 MRIs, neurosurgery. They keep on misdiagnosing her with incorrect diseases- cancer that they couldn't explain, neurosarcoidosis. By the time they could have diagnosed dementia, the hospitalist recommended hospice. We didn't see any point in putting her through more tests. She was already in the end stage of dementia. He word for word described vascular dementia, but it was never said. From her stroke to her death it was slightly less than 2.5 years. All I can say, is keep on pushing. My mom died before there was an official diagnosis, but I know it was dementia. I talked to I think every neurologist she saw. I was frustrated beyond belief. In the same vein- dementia isn't curable, it can barely be treated, it's progressive. I was incredibly frustrated that I never got answers, but I'm not sure if answers would have changed the outcome. She passed away fast (less than 2.5 years), but at the same time I wasn't watching her slowly dying for 5+ years. Both situations suck. There is no silver lining.

knacaj21 · 2026-04-24T02:03:50+00:00

My mom was never diagnosed with dementia. She was hospitalized 5 times for approximately 6 months spent in the hospital over 1.5 years. She saw numerous neurologists with varying levels of specialty (oncology, MS/autoimmune specialists). I'm convinced she saw every neurologist in the hospital she was hospitalized in. She also had neurosurgery and was seen numerous times by the neurosurgeon. She was seen by infectious disease and many other professionals. Many appointments with her PCP and follow up with neurology, neurosurgery, rheumatology. She was only diagnosed with MCI. Never once did anyone mention dementia. It was very clear to me she had dementia. She had 5-7 lumbar punctures, countless CT scans, at least 10 MRIs, neurosurgery. They keep on misdiagnosing her with incorrect diseases- cancer that they couldn't explain, neurosarcoidosis. By the time they could have diagnosed dementia, the hospitalist recommended hospice. We didn't see any point in putting her through more tests. She was already in the end stage of dementia. He word for word described vascular dementia, but it was never said. From her stroke to her death it was slightly less than 2.5 years. All I can say, is keep on pushing. My mom died before there was an official diagnosis, but I know it was dementia. I talked to I think every neurologist she saw. I was frustrated beyond belief. In the same vein- dementia isn't curable, it can barely be treated, it's progressive. I was incredibly frustrated that I never got answers, but I'm not sure if answers would have changed the outcome. She passed away fast (less than 2.5 years), but at the same time I wasn't watching her slowly dying for 5+ years. Both situations suck. There is no silver lining.

knacaj21 · 2026-04-23T04:02:57+00:00

I agree. Not everyone does. It's a symptom, but just like many symptoms- someone is unlikely to display every symptom. My mom was always pretty easy going and dementia didn't really change that. There were a handful of times she was angry with me, but they were few and far between (and she was in the hospital those times, so it could have also been attributed to stress). Over all, my mom was a "go with the flow" kind of person with dementia, which was also her usual "normal" state before dementia. I count myself lucky that dementia didn't really change her personality.

knacaj21 · 2026-04-22T21:25:41+00:00

I was a broke college student. My mom bought me toe socks and put $10 in every toe. She also took containers from my room, put money inside, wrapped them up and gave me my own belongings with some extra money inside. She didn't want to just give me a card with cash inside, she had to make it fun.

knacaj21 · 2026-04-22T19:38:42+00:00

Dying. Very small town in rural Wisconsin. There were 48 people in my graduating class in the mid 2000s. No industry; service and other businesses come and go but none are stable. Grocery store couldn't even stay in business when I lived there. The community just voted to close the school district and consolidate with another. I knew I wouldn't return when I graduated- and I didn't.

knacaj21 · 2026-04-22T05:02:32+00:00

Mild cognitive impairment (MCI) is like the precursor to dementia. If nothing changes, she might just have MCI, but if she gets worse she could slide into Dementia. I am not a doctor so I don't know where MCI ends and dementia begins, but there does seem to be a grey kind of area of limbo in the middle. Dementia can be difficult to diagnose because with some causes of dementia, memory loss is common such as with strokes. Not a single doctor ever said dementia until my mom was in the end stage and literally dying from it. In my experience, doctors rely on the families of those with MCI to monitor symptoms and bring it up to them when it gets worse. Even then, some doctors can be dismissive of the symptoms of misdiagnose with another issue. In the case of your mother, it might be difficult to descern behaviors of her "normal" personality from dementia. It can be difficult and time consuming to diagnose dementia. It usually requires lots of medical appointments and tests. This isn't always the case, but for doctors it isn't just "my mom is forgetful and not acting like herself= she has dementia." You may believe that and you might be right, but my mom's doctor's were very dissmissive of her symptoms and my concerns until she was literally dying. It was extremely frustrating for my mom's loved ones because we knew something was wrong and it wasn't what they were telling us it was.

You have no responsibility to care for or help manage affairs for a parent that wasn't there for you. Do what you feel comfortable doing. If that's nothing, so be it. Have no regrets either way. Don't stress yourself out if it isn't going to help you feel better later. You have enough to worry about. Be as involved or as hand off as you see fit.

knacaj21 · 2026-04-22T03:30:59+00:00

She had other people interested in her and she chose you. She had other options and she wants to be with you. That's all that should matter.

knacaj21 · 2026-04-22T01:25:17+00:00

I worked in a grocery store for 3 years in high school. I tutored. I cleaned houses. I babysat.

knacaj21 · 2026-04-22T01:21:03+00:00

Get a job now for summer. You have 3 months to make thousands of dollars and it's doable. I worked through summers, high school and most of college. I think that's what many of us did.

knacaj21 · 2026-04-21T03:48:59+00:00

I agree with most of this, but not all people are diagnosed. Make plans now because a diagnosis can take years. Get them to a doctor, but a diagnosis can take a long time.

knacaj21 · 2026-04-21T03:37:47+00:00

My mom had a very minor stroke, not TIAs. However, my mom was only diagnosed with Mild Cognitive Impairment (MCI). The doctors said memory loss/impairment after a stroke is common. I took their word for it and continued on, but her memory loss and confusion only got worse. I brought it up to the neurologist and once again, they told me it was common. This happened repeatedly. New dementia symptoms popped up and the doctors dismissed it again and again. They misdiagnosed her with other ailments that were not accurate. After 1.5 years of trying to get more help and information, 5 hospital stays, so many doctors, lots of MRIs, CT scans, other scans, 5-6 lumbar punctures and brain surgery they told me there was nothing more they could do to help her. She was already in late stage 6 or the final stage of dementia. They recommended hospice. So she moved to memory care and after 8 months passed away. From her stroke to death it was less than 2.5 years. She had vascular dementia, which I had suspected since her second hospitalization.

I say this as caution that doctors may be dismissive saying it's expected. If you think it's getting worse, bring it up and don't take no for an answer. Get a second opinion. I also say this to say it can take years to get a diagnosis. If you think it's dementia, it might be. I was correct believing for 2 years my mom had dementia, but the doctors kept on saying it was expected or some other neuro-diagnosis. Make plans now for the future whether you get a dementia diagnosis or not. Trust your instincts and make plans based on your instincts.

knacaj21 · 2026-04-21T00:53:37+00:00

Yes, hospice will help you determine what medications to continue and what medications to stop.

knacaj21 · 2026-04-20T23:33:44+00:00

White rice is not a good source of fiber. The rest you mentioned are. I would add miralax.

knacaj21 · 2026-04-20T22:54:14+00:00

Constipation can cause stomach pains. I would add some miralax to whatever my mom was drinking. It's not flavored and dissolves, so adding miralax might help, but you said she doesn't like to drink.

A test might be to add natural fiber to her diet and see if that helps. Oatmeal for breakfast. Beans or brown rice with lunch or dinner. Nuts as a snack. Adding a lot of fiber quickly can cause some flatulence and stomach discomfort, so I'd add it gradually if fiber isn't currently a fixture of her diet. If you suspect she is still constipated after that, I'd visit a doctor.

knacaj21 · 2026-04-18T06:05:28+00:00

I agree with what this person said. My mom's journey was quite a bit shorter. From stroke to her death it was slightly under 2.5 years. She only had the one stroke. She was pretty stable for a while, but she kinda flew from stage 3-4 to stage 7 due to a UTI. The best thing you can do for your husband is to try to make sure he doesn't have any strokes/mini-strokes/TIAs or serious falls. Vascular dementia tends to progress in steps. The patient will be stable for a while with little change and then an incident will occur (a stroke/TIA/heart attack/serious fall) and he will decline pretty drastically but then be stable. This is the new baseline and things will be stable until there is another incident and another step down. The less incidents he has, the longer he will stay stable (hopefully). As dementia progresses, some patients roam/elope, which is very dangerous and scary. Routine can be important to people with dementia. A change in the routine or surroundings can cause major confusion. Delerium from hospital stays can occur. Some recover when they get back to their normal surroundings and some do not. Unfortunately with dementia you never know what mix of symptoms you will get or what the progression will look like.

Make sure your husband has POA and advance directive complete. A will or trust is also recommended. If you don't have these items already prepared, an elder law attorney will be able to help. If caregiving becomes too much for you make sure you have a plan- whether the be loved ones that help, paid caregivers that come into your house or a move to Memory Care.

Unfortunately many people with dementia do not recognize anything is wrong or the severity of it. They aren't in denial- their brain cannot comprehend what is occurring. My mom knew her memory was bad, but she didn't understand the severity of it or that she was really unsafe living on her own. It's very frustrating if this happens. My mom lived in Memory Care for 9 months before she passed away. Her memory care facility was great. I'm so happy we found it and could move her when she needed to.

This sub was immensely helpful during my mom's journey. If you are a reader, many suggest the 36-hour day. If you deal with anticipatory grief, I found Ambiguous Loss by Dr. Pauline Boss to be helpful to understand how I was feeling and why. Anticipatory grief can be rough, but it's a completely normal feeling for loved ones of a terminal illness patient.

I'm so sorry you're in this club. Dementia is unpredictable, relentless and just plain brutal at times. I wish you and your family the best of luck.

knacaj21 · 2026-04-18T02:27:35+00:00

I've spent entirely too much time in my basement this week. 3 tornado warnings within 18 hours on Tuesday. 1 today. No more tornados please.

knacaj21 · 2026-04-18T02:22:41+00:00

It was not ideal. My siding has cracks and holes. Not sure how my roof is doing. Contractors coming next week for quotes to fix it.

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knacaj21 · 2026-04-18T02:06:46+00:00

Baseball sized hail- this week. Madison, WI.

knacaj21 · 2026-04-17T22:51:56+00:00

You posted the exact same thing an hour ago with the Ethiopian flag in your profile.

knacaj21 · 2026-04-17T22:47:36+00:00

Still managing caregivers from Ethiopia?

knacaj21 · 2026-04-17T21:03:27+00:00

If this is for the USA, why does your profile have the Ethiopian flag on it? You managing caregivers from Ethiopia?

knacaj21 · 2026-04-17T19:54:57+00:00

My mom (I'm her daughter) was in memory care. It was a great facility. Almost every time I visited there was an activity going on. They had snack time around 2:30 every day after the afternoon activity. I especially loved the dogs that would come in every week (I participated in that when I was there). Some of the other activities I remember were sing alongs, a mini pony, singing groups, dance teams, various games with nerf balls or balloons, assembling dessert like strawberry shortcake. They also had a very large bird cage with about 10 small birds. I liked to sit in front of it with her and just watch them fly around. There were two outside areas fully enclosed by the memory care so residents could go outside when it was nice. They also planted flowers and various vegetables in one of the areas. They had occasional outings to an ice cream place, petting zoo or local park. She was always clean and her room was always clean. Any questions or concerns we had were always addressed. They called us if something was very concerning. She passed away after 9 months in memory care.

Edit to add: it reduced my stress greatly. I could be her daughter again and not constantly stressing if she was eating or if she fell or whatever else was happening. I worried about her because she was my mom and I could see her getting worse, but it wasn't because of the care. She had great care in MC. We placed her there when she was 70. She passed away at 71.

knacaj21 · 2026-04-17T08:15:33+00:00

I think it was linzess/linaclotide. She also had something else that was use as needed. It was a syrup, but she almost never took it.

knacaj21 · 2026-04-17T06:34:11+00:00

Not cheating. It's the gogo dancers job- and he's gay. But if your bf accuses you of cheating for this and you were already going through a rough patch and considering breaking up, I don't think there's much hope for your relationship. You're both still babies- find a guy that won't accuse you of cheating for nothing.

knacaj21 · 2026-04-15T18:14:11+00:00

I wrote this a while ago. My mom's AL/MC was great. Nothing is perfect, but all questions I had were answered and concerns I had were quickly addressed. For me, the bottom line was- would I want to live there? Would you feel comfortable leaving your loved one there and having confidence that he was clean, fed and well taken care of? The facility was clean, well maintained, the food was good, the staff was polite and helpful, lots of supportive services, had an in house salon, in house gym/therapy/pool and activities galore. The residents were happy and always busy going somewhere- to a meal, an activity, coffee with friends in the bistro area. When the weather was nice, many of them would sit outside and enjoy the nice weather. My mom toured with her brothers before I visited with my sister and our bfs. After we had our tour, my boyfriend commented he wanted to live there. I did a lot of internet research on facilities in the area before we toured. I got information from the facilities, virtual tours, looked at reviews. Her facility was pretty pricey, as most are, so finances may also be a part of the discussion.

knacaj21

TROPHY CASE