H

Merla

Jgirl57

Others are more knowledgeable than I am

and will welcome you with their expertise. Most of the 

observations you have mentioned are ones my HWD 

has displayed. You will learn a lot from this forum

with good advice how to assist your loved one on this 

road. Come to this site often.

Michael Ellenbogen

Financial issues and doing math

SusanB-dil

Hi Merla - welcome to 'here'...

I think for our LO's it was kind of a series of little things. For MIL, there were at first short-term memory issues. For example, forgetting where she had put something down. After searching for several days, found the checkbook on top of a fireplace mantle, was one of many instances. And then financial mistakes were starting to affect other things, as well as another family member taking advantage of the new-ish lack of judgement, so they were taking a lot of money from her.  For my mom, she knew she was forgetting even little things that she had known her whole life. She started leaving notes for things all over the place.  Basic recipes, where she kept certain pots, pans, articles of clothing, etc.

For MIL, we are still dealing with fallout of very important papers she had not deemed important any longer.

At this point, both MIL and my mom have at times forgotten who I am. So far, this is intermittent, but still disheartening. Mom is more and more figuring I am her sister.

N00dles

For my ADLO it was getting lost while driving, lessening critical thinking skill, and trouble with math that were signs.

HollyBerry

- getting lost while driving in familiar places

- losing keys and phones and purses and credit cards

- making really bad decisions

- increased social awkwardness

- being vulnerable to bad advice from others, being taken advantage of

- we wondered if all this was relayed to concussions from sports over the years and actually hoped it was...

BassetHoundAnn

With my mom the first sign was that she was unable to handle her finances any longer. The manager of her bank called me and said I needed to take over her accounts. My mom was going in every few days and asking bizarre questions, not comprehending the explanations. 

I stayed with her for a spell and except for the financial problems she acted perfectly fine in all other regards. Nothing else to worry about. 

About six months later she started accusing friends and family of stealing odd things, breaking into the house at night and swapping out her brooms and rearranging extension cords. 

It was a rapid and alarming decline from that point on. 

ninalu

At the time these things happened, I wasn't able to see them as signs of my mom's Alz. They seemed like personality wonks of someone who's overstressed or overtired or fearful / suspicious. 

Looking back, I think they were a cluster of signs. 

1. Difficulty leaving the house - fearful it would burn down or be broken into while she was away. We'd go to the grocery store and she'd double, triple, quadruple-check that she locked the doors and windows. Sometimes she'd have to turn around from where she was going to return to the house and check again. This was the very FIRST symptom and it showed up 10 years prior to other things. 

2. Isolation and canceling plans. For a couple years, she cancelled every plan we made and honestly I felt pretty frustrated with this. She always had a good reason (I'm too tired, I'm too busy, I'm not feeling well) but it caused some real questioning on my part about our relationship. It was only several years later that I realized she must have had health stuff going on that made it difficult to manage social engagements. 

3. Food / drink choices. Eating five single serving yogurts in a row, rather than preparing a meal with various food groups. Or having 7 glasses of wine with dinner rather than 1 or 2. 

4. Getting lost while out driving. She'd intend to go to one place and wind up 5 or 50 miles off course. She was escorted back to her hometown by police in another state once. That made me sit up and take notice. Navigation became very difficult for her, even though her actual driving skills were in tact.  

5. Hiding important things (her wallet, drivers license, passport, mail) in hard to reach places. I'd visit and find an important piece of mail in the spice cabinet or she'd give me money for groceries and retrieve her wallet from inside the closet, top shelf or under the mattress.
After this came the forgetting where she put the important things and thinking someone had stolen them.

harshedbuzz

Merla-

Hi and welcome. I am glad you found this place and suspect you have reason to be here based on your post.

My situation is a bit different than most dad had mixed dementia-- Alzheimer's and an alcohol-related Wernicke-Korsakoff's-- which presented with slightly different symptoms. My dad and I did not enjoy an easy relationship, so I tended to have a more pragmatic interpretation of what I was seeing rather than the rose-tinted, excuse-making take my mom had. Also, my parents lived at a distance and I didn't see him more than a couple times each summer and maybe once during the winter.

As early as 2005 I noticed what others would describe as personality changes. He did take a turn to a darker, provocative, and more vindictive behavior. I suspect a lot of this was a loss of his social filter and empathy. I'd seen this side of him from time to time, but it was new to others. During this time my parents lost much of the core social group they crafted when they moved to a golf/beach community and started spending half the year in Florida where he eventually alienated that group as well. 

By 2008 I noticed the first real memory lapses. He got lost driving to a high school band competition held directly across the street from his beloved brother's house and less than a 1/4 mile down the road from his first bricks and mortar business. We could see the building from the top row of the stands and no recognition. He swore he'd never been, got lost and told me "They've moved all the roads". It was around this time we also notice some significant issues with temperature regulation-- he'd wake up in the morning and set the thermostat to 85F. In July. In coastal MD. After he died, I did a deep dive into their investments and discovered he'd day-traded away about $360K. 

By 2010 he pulled into Confabulation Station. A confabulation is a memory that is mostly false; the person may have a recollection of an event but not recall the pertinent details and backfill the holes with a who, what, where that might be plausible to someone unfamiliar with the story. To my ear, this felt like a family history re-write. He became the hero-protagonist of all positive stories and I was credited with every awful thing my late younger sister (his favorite) ever did- from teenaged shoplifting, street racing and then throwing a beer can at the cops when they broke it up, leaving her pre-school aged children in a bar and disappearing with some random patron, etc. Conflating is seen in many of the dementias, but it arrives early and is almost universal in WKS.

Around this time he also became very suspicious. I won't say paranoid because he had reason to be wary of me. I made a rookie mistake of suggesting a screening to them during a visit once. His memory was worsening as well. 

By 2012, his memory lapses were much more obvious to others and harder for mom to deny although she managed telling me his behavior was a "normal part of the aging process". He became much more apathetic and cheaper around this time which impacted the quality of their marriage. The apathy was really unusual for dad who'd been quite the social butterfly. He also started to struggle with books around this time. He read a lot. I often bought or lent books for him I knew he'd enjoy, and he really struggled to get into them blaming me for buy lousy books. He could still decode but didn't have the working memory to recall what he'd read so he got nothing out of reading. "Somebody else's fault" became a theme.  

Twice a year I advocated for getting him screened by their PCP (to mother alone at this point) without any luck until a crisis in early 2016 during which she almost died because he was unable to recognize how sick she was or get her appropriate help. I got a call as an emergency contact from a hospital in FL because dad went out for a sandwich and never came back. When I got to the house, he was hosting happy hour with neighbors wearing only a bath towel. 

We did manage to get him evaluated through an ER admission for altered mental state/psychosis in August 2016.

Are you a next-of-kin type relation or is there someone else who should be stepping up to keep this person safe? 

HB

caregiving daughter

Change of personality. Unable to talk logically about feelings.

JDancer

I didn't recognize the early signs while they were happening, only in hindsight.

I thought we were having communication issues. He would say he told me things I didn't remember. I thought maybe I wasn't listening. He wouldn't remember things I told him. I thought maybe I didn't really tell him. Or maybe he wasn't listening...

Then some friends stopped by when I wasn't home and left something for me. When I asked where it came from, my DH claimed I was home when the friends came over. After that, I started paying close attention and saw many signs. In my experience, problems with finances and social situations came much later.

MN Chickadee

My mother lived with Alzheimers for close to 20 years, though I did not know at the time.  After becoming her POA about 10 years ago I saw from her medical records she had reported memory issues to her doctor in her 50s and said that they were affecting her work, but they were brushed off as depression, work stress etc. Years later we would all discover it was indeed Alz. She was private about her prognosis when she was still in a position to discuss it, so we never discussed it. But it became more and more apparent. First to us family members. She would tell the same story a couple times over a conversation, ask the same question numerous times. She had catchphrases that would get used a lot, and for a time is was hard to tell if she was being funny or unknowingly repetitive.  For a while she could still showtime well in social situations and put up a good front, but the repetition continued to get worse. The loop got shorter. This was definitely the first sign, and then came the other issues like odd decision making, getting lost in her neighborhood, new bumps and scratches on the car, hoarding weird items, odd clothing choices, refusal to keep her physical appearance up and to her normal standards, and so much more before the physical changes even set it. The Tam Cummings 7 stages of dementia can be a useful tool to consider whether your LO may have a problem and in need of a diagnostic process.

https://tamcummings.com/stages-of-dementia/

Sounds like a full work up with a doctor is in order. Start with blood work at the primary care level to rule out the more simple causes, and work up to neurology. You may have to use therapeutic fibs to get this done, like not telling your LO what the appointment is for, it's a new requirement from Medicare to get a check up so you don't lose insurance, it's a quick blood pressure thing etc. Anosognosia can come pretty early in the disease making them think they are fine and resist care and doctors, making fibs necessary. 

Rather Not Say

My mom called me one day after work crying because she got lost heading to work and had to ask a stranger to help her. That was our first sign something was not right.

Emily 123

My mother stopped calling every weekend to chat.  At first it was once in a while, but it became a consistent thing.  We saw that her memory of some conversations wasn't being retained all the time, but she was still navigating things well initially.

Hessy

I am new here, these are exactly the same things I am seeing with my mom! I talked to her family doctor a year ago and he hasn’t done or said anything for her. Now it seems to have gotten so much worse! She thought someone stole the Christmas presents and I am actually scared that by next Christmas we won’t recognize her or her us.

May flowers

My MIL said her first indication was financial. He was always so on top of money matters, but became more and more confused and forgetful.

VKB

My mother started with repeating herself then moved onto being unable to cook or even make toast properly. Hoping your family member is being watched carefully in case she becomes a danger to her/himself if left alone or driving.  My mother early on showed signs of careless driving so we had to stop her.  I prayed for you and your family member.

Bob in LW

I observed the beginning of my SO's memory loss when she could no longer remember where to find items in her kitchen although she had lived there for over 12 years.  I have learned that when she asks the same question several times, to give a short simple answer, because she won't remember it anyway.  I have also learned to not mention her memory loss to her because it makes her upset and frustrated.  The only exception to that is when she accuses me of withholding information about something when we have actually discussed it more than once.

It is always important to remember the extent of a person's memory loss, because dealing with them in a rational manner rarely accomplishes anything.

*Ollie*

Hey Merla,

Though my mom currently lives with us, we lived in a different state prior to this and despite frequent phone calls and occasional visits, the extent of her dementia was not obvious to us until her moving in with us.     

Thinking back, her world kept getting smaller and smaller over the years.  The only things that remained were her tv watching and going to the corner grocery store.   After Covid it shrank even more. Again, hard to see when you live across the country.  We'd ask her what she did and she'd say things like, "Oh the usual."  Or, "Nothing much but that's the way I like it."  She didn't have many hobbies so I guess it didn't seem that unusual to us.  

The personality shifts are more noticeable.  Rigid, more anxious, change is more difficult, less empathy and tact in general.  At this point my mom won't do anything alone except watch tv.  Not sure my mom is disrespectful as opposed to super self-centered at this point.  It's like her awareness of others has dimmed. We can be super involved in a task and it's almost like she can't even visually see that.  She'll blab away at us.  It's pretty incredible.   

Iris L.

Hessy wrote:

 I am actually scared that by next Christmas we won’t recognize her or her us.

The problem is that family members and even doctors often tend to wait until the dementia is obvious to everyone.  When these subtle happenings present, it is best to investigate.  There is a small chance that a dementia mimic is responsible, and there may be a treatment.  There will be baseline markers for future testing.  A thorough diagnostic process can take weeks or months.  If the diagnosis is indeed Alzheimer's Disease or a different dementia, there is time for a trial of medications to manage the symptoms.  Also time to get legal and financial affairs in order and to determine the PWDs wishes.  Don't wait.  Investigate.

Iris

GothicGremlin

My sister was diagnosed at age 59, but she'd been having problems for many years before that.

In hindsight, after having a conversation with her ex-manager, I found out that Peggy had been having issues at work (which I would never have seen) - not finishing tasks, struggling with assignments, etc.

Things that I saw at the time --

She couldn't find her driver's license - we searched high and low for it and found it filed with her music CDs.

Our family is Italian, and so we have Italian food at Christmas. Peggy took over the job of making the sauce. I got a call from my cousin (the Christmas before Peggy was diagnosed), and they needed to redo the sauce because it didn't taste right. Plus, Peggy asked me if I would make the meatballs. I make really bad meatballs (I don't eat meat), so it kind of took me by surprise that she would ask if I'd do them. Peggy used to make really good meatballs. I'm not sure what they tasted like, but they held together well, and looked like how my grandmother used to make them.

About 7 months before Peggy was diagnosed, I needed Peggy to come with me to the bank - I was almost done with my parent's estate and I needed her signature for something, and she couldn't do it. She asked if I could sign for her. I told her she needed to do it herself. After much effort, she managed to sign the form. That was weird.

That same day, as she was getting ready to leave, she couldn't find her car. She had parked it in some parking garage and couldn't remember where. She and I walked all over creation looking for it, and eventually we found it.

So, aside from the car episode, there was nothing dramatic, just odd things.

JDancer

It frightens me to read that someone who couldn't sign her name was driving.

GothicGremlin

To JDancer - Yeah, me too, now that I know everything, especially since by the time all of that happened she had probably moved from MCI to early stage Alzheimer's.  As far as I can tell no one our family has had Alzheimer's, and I've never known anyone else with it, so I didn't know what it looked like, so it never occurred to me that she had it. Almost everything I know is from hindsight (and quizzing Peggy's ex-manager and her friends).

The car/bank episode happened in Feb. 2018, and she wasn't diagnosed until Aug. 2018.  And it literally happened the day before my s.o. and I moved away from San Francisco (wish I could take that one back!). It was right after all of that happened that I started connecting dots,  asking questions, and got her to go see a neurologist.

It all chills my blood when I look back at it. We were incredibly lucky nothing horrible happened on the road.

The activist in me wants to work with agencies to get the word out about MCI and early onset Alzheimer's because I think we as a society need it. In Peggy's case, literally no one, not family or friends, realized what was going on with her, mostly because she was so young.

FloydSnax

For my mom it was kind of weird. About 15 years ago, she couldn't find her way home from the gym, which she went daily to back in the good 'ol days. Then there were no signs for almost a decade. Now, she can barely finish sentences.

SusanB-dil

Merla - you are going to visit - that would be a good time to check on a few things in general. If you do not have POA, you can still check the fridge and cupboard for out-of-date food. Is LO eating regular, healthy meals. Maybe you could check on how they are driving. Everything fine, or is often getting lost, and car maintenance up-to-date? If possible, check that finances are in order, although I don't know just how close you are to your person. Utility bills being paid on-time and not paying scammers. Someone close may be able to have LO checked for other things by their doctor, such as vitamin levels, thyroid levels, etc... as Iris said, there are other things that can mimic alz.

RunningWorried76

They say hindsight is 20/20, so true. After my mom starting having the more serious mental problems associated with dementia and she got the official diagnosis, I looked back and remembered some earlier signs before we realized something was up. Few examples:

1) One time she was at my house and wanted to use a screwdriver for something. I gave her one of those ratchet type screwdrivers. And it's not like she had not used one before. But this time, she could not figure out how to use it. And when I tried to demonstrate it, she was completely unable to catch on. I couldn't fathom how she could not get it.

2) Another time, while driving by herself to a sibling's house that she's been to dozens and dozens of times before, she got completely lost, like went hours off course of a 6 hour drive.

3) And probably the most recent thing when I started feeling like something was up was we went on a vacation to Mexico, and she would just disappear at times. Turns out she was just usually in her room laying down. Beautiful resort, beautiful weather, we're all sitting by the pool or something and having drinks, eating, etc. and she is in her room. Had to keep coaxing her to hang out with us. Funny thing is, to this day she says it was the greatest vacation of her life.

Those 3 things are probably as far back as I can remember things like that happening with more frequency then mom just every once in awhile being 'a bit forgetful'.

That was about 5-6 years ago. She is way worse now. Completely unable to take her of herself, so she lives with me and my family and we are her primary caregivers.

WorkWithWhatYaGot

LO made a detailed mis-statement about their birthdate.

Something like, "his birthday is Tuesday, the 12th and mine is the 14th. 

His birthday is today,  so my birthday is tomorrow. "

This seemed very out of character and I started to look more closely and of course I missed plenty of clues before that. The more I learned, the more I saw that I had missed. The pandemic softened a lot of things. Just staying home seemed reasonable, etc.