My 99-year-old mother seems to have created a little world of her own. She tells me about a young man that pursues her. Has anyone else experienced this?

Is there a medical school near you or driveable distance? If so they will have a gerontolgy program. My mom is in Texas and there is a UT system program that she is in - I can't say enough about it. It's run totally different than the family/internal medicine practice she was in.

She has to be seen every 3 mos. You cannot schedule a visit more
than 2 weeks in advance and they have 2 floors for brief visit hospitalization - most of these are they for dehydration related issues
or failure to take medications. If they are really ill then they go to the traditonal hospital. She was there for 3 days for an evaluation.
It was great and slot less confusing for all of us. Social worker came to see how she got dressed and ate with her. That let her be certified for independent living. She's good 28 of 30 days but you can tell that her age will finally catch up with her soon.

All they see is old - her MD has 50 patients over 90. So when she compares my mom to others it's a good comparison as an 85 yr old (my wicked MIL) is totally different than 95 in cognitive and physical abilities.

I told my mom that her doctor wanted her to see another doctor as
she was a special case.....she bought it.

For me the issue with MD's is that if you see a specialist, then it's
all about what they know about. Eye Doc = macular degeneration;
Ortho = surgery and walker; etc. The gerontologists so far have looked
at her whole being, so if her blood sugar is a bit high but borderline
that's OK as starting something for diabetes would just get too confusing at 95. If her bone density is OK then no to Boniva as it makes her too nauseated and then she get's ill and loses weight.

The best Lewy Body info will be on UK/British sites.
USA is all about Alzheimers.

I have an MPH but stopped working in health planning ages ago.
I do graphic design. Good Luck!

Ask her if there have been any animals visiting her. That is the
classic Lewy symptom.

Hi - I've just finished Googling Lewy Body Disease and it really fits my mom to a "T". I am reading this stuff and going "Oh My Goodness!" Just in the past three weeks I've noticed a decline in alertness and attention span. The visual hallucinations have been going on for a year. When I first learned of this problem, I took her to the eye dr and her Macular Degeneration dr said that's normal with Macular - kind of like the eyes have been trying to see for so long, and even though they can't, they are still getting messages from the brain and trying, thus bright lights and wallpaper. I read that Psychotropic meds are not a good thing. . . sleep disturbance is mentioned, and she has that. Complains of awakening during the night and feeling very cold. She apparently does not sleep well at night and awakens frequently. I've also noticed just recently that she's developed kind of a shake, like in Parkinson's.

I am not sure if we have a Gerontologist in our area but I am going to do a search next and if so, I plan to make her an appointment. Otherwise, a geriatric dr will have to do. I have wanted to take her to a dr that specializes in the elderly for a long time but she insisted on sticking with her family practitioner. It sounds like we need some expert advice. The important thing is to keep her as safe as possible and I've been concerned about her assisted living facility for some time now.

I appreciate your being so candid with me. Are you a health care professional? You sound like it? I'm Betty from Southern Wisconsin and I'll let you know how things turn out. THANK YOU!

OMG2 I am so laughing with this. Mine gets robbed about every 3 weeks.
It all starts out the same way, phone call late afternoon....."I have terrible news, I just don't know what to do..........I've been robbed" So far they have
taken food from the refrig, her hair rollers (those really old kind with the bristle encased in a metal loop that you haven't been able to buy since 1973), her camisoles, soap, toilet paper, jewelry, and family photos. None of this is happening but so real for her.

Now any good jewelry is long gone so it's just costume stuff. She hides
it inside flashlights. We put flashlights on the door handles to each room,
so there's like 5 hanging in her apt. Yes all 5 were filled with jewelry.
Where the batteries went I have no idea. Then she tells me that all
the flashlights are broken. When I checked, thats went I found the jewelry. So I have put strapping tape on them so this doesn't happen again. My cousin got her one of those neck stands like at the dept. stores, so her 7 necklaces go there. She counts them and give me a report.....

She doesn't get any real $$ - She get's 20 cash each month and then
she has travelers checks. (They go shopping twice a week and 1 big shopping trip (Steinmart, macy's) once a month) This we do just to let her feel a sense of control/ownership as everything is included in her monthly fee and billed. So far she has lost $ 300 of them and I've found all but $40 hidden away. It's a good system as she doesn't worry about it as they can be replaced.

I took all her purses away as stuff was getting lost, left open, hanging off her arm, being left under tables. etc. What she has now is a Swiss Army all cotton & velco over the head travel pouch. My son did her initials and nick-name on it and she just loves wearing it. it keeps her hands and pockets free and is super light weight and can be washed.

Ativan is very addictive - so you were right in not taking her off of it.
There's a lot of anxiety with getting off of Ativan, i don't think at her age
it would be pretty.

is there a gerontologist you can get her to? She probably can use a
nutritional profile done to see if there's anything there. My mom had
one done 3 years ago and she was put on Megace for 6 months to
increase her weight - she's tiny - then once she gained 10 lbs gerontologist took her off as the less RXs the better. The Remeron
helps keep her appetite up and she's maintained her weight.

My gosh! Some of your things hit home! Her living room window looks out across the parking lot, and there are also lights, high ones, in that lot. I figure she's seeing lights shining in from the parking lot.

ANd I never thought of the connection of the oil spill and the seashore.

She doesn't have a lot of clutter, in fact, very little. Of course, she thinks her place requires a great deal of cleaning and says she spends all day working, but she doesn't.

Mom does substitute words, or will get hung up trying to remember simple words.

She believes that she is being robbed blind. She doesn't want to have food in the frig because "someone will take it". . . .be it orange juice, wheat bread, raisin bran. . . . .cheese spread and crackers! She believes that little children come in and play with her things, and then take them (She was an elementary school teacher for years) . .. .tells me that her hearing aid batteries, costume jewelry, bottle of shampoo, checkbook, etc are being taken, then returned the next day,. I attributed some of that to her eye sight . But perhaps it's more than that. She will also hide things, and then forget where she hid them! Augh! I try to tell her not to hide things but she does anyway. She remembers who has visited her and what she had for dinner. . . .but forgets where she put her checkbook. She can't see to do any financial business, so we handle all of that for her. About 25 years ago, right after she was widowed, she was burglarized - not home at the time but she and friends returning home interrupted the event in progress. I've wondered if perhaps the robbery is replaying itself somehow now. At the time of the robbery she did not seem real concerned about it.

She has a family practitioner, but most of his clients are the elderly. I've thought that he pretty much just passes her through with a nod. This same Dr put her on Lorazapam years ago and she is pretty much addicted to it. She takes a tiny bit every am and pm (the nurses dispense her meds). . . . then about 5 years ago she saw a psychiatrist and in an attempt to get her off the Lorazapam, she was started on Paxil. She did so well on both together that we decided not to ry to wean her off the Lorazapam, so she continued on both. Very low doses of both.

I've only seen her doing poorly like this in the past few months, and she's only been fixated on this "someone's stealing from me" and "I have a beau" thing the past month or so.

I am fearful that trying to take her off one of the meds or both might be too rough on her.

It is sure nice to talk to someone about this!!

OMG well I have a good laugh!!! Engagement rings on the walls - awesome!

Idea - the Florida/seashore I bet is because of all the news about the
Horizon oil spill as there's been a flurry of media on tarballs on the
Florida coast and damage to SEASHORE all along the Gulf.

Can you spend the night so you can see where there are shadows?
My mom had these floral arrangements that did weird shapes on the
walls when a car would go down the driveway beside her apt building.
Got rid of those suckers the next AM. Also look for shiny things and how
they reflect, like a crystal vase or glass on picture frames.

Declutter whatever too. More stuff == more anxiety.

Could the young man be your dad? Maybe get her talking about when
they got engaged/met and see if the stories are similar.

The advanced elderly that don't have a chronic disease but whose problems are that they are really, really old and things have just flat worn out like eyesight, hearing, knees, etc, as just so different for MD
to deal with as there is no big disease with a set protocol. Like cancer or diabetes or heart disease. Once she switched to a gerontologist and
not an internal medicine MD things got better medically for her.

I think your mom's in 2nd stage dementia. Is she substituting words? For
mothers day we sent the mom's a box of cookies and pralines. She
couldn't remember the word praline and called it cake. Once I said
praline then she started using the word to describe the different flavors she got. She also can't balance a checkbook but can still do a list of
numbers +/-. She also has false beliefs (she gets robbed) that are
totally real for her but not happening.

Decided against Aricept because this is probably Lewy Body dementia
but she does Remeron every evening. Old MD had her on an antipsychotic which was bad and made her depressed and mean personality changes (she is not by nature mean, more a martyr type)
Good luck. Let us know when she hits 100!

Hi! Thank you so much for your response. I didn't have much room to post the situation as I was limited. . . now it appears I can go into more detail. Mom has a hard time getting around due to spinal stenosis and uses a walker. . . She doesn't shuffle (yet). She is hearing impaired and has a wonderful hearing aid. She also has advanced macular degeneration. The eye dr feels that she sees some of the things she does because of the macular - she talks about seeing wallpaper patterns and bright bursts of light . She claims that a young man, whom she says she's never met but she just knows it's a young man, goes to the parking lot at night and shines these bright lights through her window. The light goes across the ceiling in her apartment. She says he flashes images on her walls of engagement rings and he wants to marry her. I attributed a lot of this to her macular until recently when she has embellished the story with how he wanted to talk to me to get permission to mary her, and how he was going to call me. She was angry with me yesterday when I visited because I told her I'd had no phone calls, yet she was convinced he called and I was holding out on her. She also says he's from FLorida and works at the seashore!!! I am attributing this to dementia and have been advised to not argue or try to talk her out of it. I try to just go along with it, making an effort to change the subject from time to time, asking about things that happened during the day and giving her a chance to think , come back to reality and respond. It's hard to listen to this as it's all she really wants to talk about. I hate that she's spending her final time on this earth in such a muddled state. I appreciate your advice - we have followed a lot of the points you are explaining, and the lights are definitely something we have provided, but not the timers - good idea! Mom insists that her apartment, and the facility are very dark because the place is cutting costs and not turning on the lights. I try to explain about the macular, which she's had for a long time, but she isn't accepting that. Totally turns that offf when I talk to her about it.

I'm thinking this could be early stage dementia .

I'm assuming this isn't happening, that this is in her imagination but
100% real to her?

If so, if the "man" isn't threatening or making problems, then just go with it.
There is a type of dementia called Lewy Body dementia and one of the
hallmarks is the patient seeing something that isn't there. My mom, who
is in her 90's, has seen a cat and a rabbit. Animals seem to be common
with Lewy. The pet doesn't do anything or speak, it's just there for a short period of time. Totally unthreatening The first time I assumed it was a cat that belonged to one of the residents (she's in indep living) that wandered in. Asked around and only no cats on her floor.

Happened again twice right before her every 3 mon gernotologist visit. When I told MD she told me about Lewy.
She also has a "shuffle" when she walks-- another symptom.

Lewy is different from Alz. in that they are usually really good in their daily activity and very cognizant most of the time and then there will be an episode of confusion/agitation/anxiety in which they forget or have other cognitive issues (don't take their meds, forget language)etc. It's thought
that happens when a protein deposit (Lewy body) gets formed or reaches
a certain level in the brain

You can only know for sure by brain tissue biopsy when they die.

MD said the the best things to do for the very advanced age elderly
(those in their 90's and 100's) that are still functional is:
1. glasses and extra pairs - current Rx
2. Hearing aid - they have to wear it daily
3. water
4. big traditional clocks (with a face on it)
5. only flat closed shoes that they slip or velco into - no shoelaces
no flip-flops, no heels
6. lots of light in their rooms
7. if you have a choice between something in a lighter color or
darker color always go lighter.

What we did was put in 3 lights on timers in the darker areas of
her apartment and 2 solar on her terrace. This in addition to the lamps she can turn off and on. The inside ones we did so they start 1 hr before sunset and till 11 and then back on for 2.5 hrs in the morning starting @ sunrise. So there's a consistent rhythmn.

Also got rid of big tall dark bookshelves and did lower open blonde wood ones from Ikea. Also got rid of all her shoes except for the SAS shoes as they are flat and fit with support. She seemed relieved as she could never
"find" things in the old shelves.