Dementia and Alzheimer's

[Not a cat 5,714]

My grandmother had it.  My 2 children have been told my will has it as a 50/50 split, except if I'm ever diagnosed with Alzheimer's, the one that offs me gets 60. I wouldn't wish that on Barry Switzer 

[Nonbryan 173]

47 minutes ago, Reagan1k said:

The first and easiest thing you can do is get a copy of the “playbook” Coach Frank Broyles wrote for caregivers  
 

Most of your real struggle will be dealing with the denial and other issues presented by the spouse.  It’s incredibly frustrating to seem them put their head in the sand but it’s a natural reaction for many.  It may well take a 3rd party or expert to break through the barriers.  Parents don’t want advice on finances, marriage, and sex from their own kid who’s butt they wiped as an infant. 
 

It’s hard but have some compassion for the spouse because their dreams of what the rest of their life would / should be are being smashed in front of their eyes daily and they feel overwhelmed even as they may act like nothing is wrong. 
 

See if you can get him to go with your wife to an Alzheimer’s support group- even under the guise of supporting your wife and not because he “needs” it. 
 

If they have a church family reach out to them and get them in the loop. Look for a local association and investigate their caregiver respite programs - basically like a Mother’s Day Out for a couple hours 1-2 days a week where the patient gets dropped off and the caregiver gets some free time.  From there you’ll also get resources for in home sitters and other programs.

You’ll get frustrated and overwhelmed but keep your focus on supporting the non-Alzheimer’s spouse as that’s who you can really help and need to help as their health- both physical and mental is paramount.  If they crater under the stress, the whole things goes to shit as you now have two for whom you must provide care. 

Thanks Reagan.  You hit the nail on the head like 20 times in this post.  Very helpful and chilling to see that the recipe is the same each time over and over.

[Iceman 2,726]

Not funny, but the "off me gets the split" is...

 

totally udnerstand.

[Reagan1k 3,024]

On 5/17/2018 at 4:29 PM, Reagan1k said:

All diseases suck - fuck'em all.......but Dementia and Alzheimer's are such dreadful conditions.  We all know people affected, and if not, we will.  Therefore I thought this deserved a thread.

Recently found out that a close family friend has a definite diagnosis of FrontoTemporal Dementia (FTD) at age 48......Forty Eight years old.   JD/CPA and C-level exec at a large company.  Got let go 18 month ago for performance reasons no one could really explain.  He just couldn't do the job.......  No drugs or alcohol; that was thoroughly vetted.  Strange, sporadic behavior  started to accelerate and a lack of focus / memory  was chalked up to depression from losing his career.

 His internist finally saw the light when he went for an annual and the answers to his routine history questions were so out of whack with his file and the Doc's personal knowledge of my friend that he suggested a specialist and they figured it out. 

He's now working as a food server in the cafeteria of a nursing home to keep some personal dignity and stay occupied while he still can. The prognosis is dire as this FTD progresses rapidly and is a killer both mentally and physically.

We all feel gut-punched.  He has a wife and 2 small kids at home now going to counseling to deal with their father becoming a shell of himself before their eyes.

I have an elderly FIL with Alzheimer's and as difficult as that is, I cannot come to grips with someone under 50 drawing this shitty hand.

 

Fast forward 24 months and my buddy is now almost non-communicative and his physical health is failing- at 50 years old.

His next move will be to a memory care unit with round the clock attention.  His wife is no longer able to manage him and care for their kids even though he goes to a daily care facility 3-4 days a week.  
 

Just awful...

[gaspar 102]

My dad was diagnosed with Parkinson’s at age 60, he’s now 75, but outlook is not good. He’s in the final few weeks / days now as he’s having issues swallowing anything. He had the deep brain stimulation (DBS) surgery and that helped control his tremors for a few years. 

He was diagnosed with dementia around age 70. We made the tough decision to put him in a memory care home after my mom couldn’t take care of him any more. For example, he would wake up at 3am and want to go to work, he had 2  unexplained car crashed (driving into a barrier in a parking lot) and finally got to where he wouldn’t recognize me or my sister. 

It’s a heart-breaking end to a long life, but he was in top shape (5’7” and 150 lbs) all his life, so really just got dealt a shitty hand. 

[Cheeseweasel 26,438]

6 hours ago, gaspar said:

We made the tough decision to put him in a memory care home after my mom couldn’t take care of him any more. For example, he would wake up at 3am and want to go to work, he had 2  unexplained car crashed (driving into a barrier in a parking lot) and finally got to where he wouldn’t recognize me or my sister. 

That was my mom. Toughest thing my Dad had to do was put my mom in a cognitive care facility. At the end, he had to padlock the door because Mom would get up in the middle of the night, grab clothes and declare that they had to get on the plane & they were late. Sorry that they are going thru this, man.

Edited January 6, 2021 by Cheeseweasel

[gaspar 102]

On 1/6/2021 at 5:45 AM, Cheeseweasel said:

That was my mom. Toughest thing my Dad had to do was put my mom in a cognitive care facility. At the end, he had to padlock the door because Mom would get up in the middle of the night, grab clothes and declare that they had to get on the plane & they were late. Sorry that they are going thru this, man.

Likewise, sad to see anyone, especially parents go through that. DM me if you all need any support. 

[MillerEP 30,501]

https://www.iospress.nl/ios_news/aluminum-is-intricately-associated-with-the-neuropathology-of-familial-alzheimers-disease/?utm_source=join1440&utm_medium=email

Aluminum Is Intricately Associated with the Neuropathology of Familial Alzheimer’s Disease

APRIL 9, 2021
Keele, UK – A new study published in the Journal of Alzheimer’s Disease Reports continues to support a growing body of evidence that aluminum contributes to the pathogenesis of Alzheimer’s disease (AD). Researchers found aluminum co-located with phosphorylated tau protein, which is an early initiator of AD. This study builds upon two earlier published studies (including Mold et al., 2020, Journal of Alzheimer’s Disease) from the same group. The new data demonstrate that aluminum is co-located with phosphorylated tau protein, present as tangles within neurons in the brains of early-onset or familial Alzheimer’s disease. “The presence of these tangles is associated with neuronal cell death, and observations of aluminum in these tangles may highlight a role for aluminum in their formation,” explained lead investigator Matthew John Mold, PhD, Birchall Centre, Lennard-Jones Laboratories, Keele University, Staffordshire, UK.

[Apep 645]

So what do we take from that? Time to change deodorants and no more aluminum dishes or cans? Parchment paper and plastic wrap instead of Reynolds? Reformulated vaccines to remove aluminum?

[MaybeACoordinator 8,349]

14 hours ago, Apep said:

So what do we take from that? Time to change deodorants and no more aluminum dishes or cans? Parchment paper and plastic wrap instead of Reynolds? Reformulated vaccines to remove aluminum?

Investment tip:

[Reagan1k 3,024]

20 hours ago, Apep said:

So what do we take from that? Time to change deodorants and no more aluminum dishes or cans? Parchment paper and plastic wrap instead of Reynolds? Reformulated vaccines to remove aluminum?

Cilantro and chlorella are naturally chelating and help to flush metals from your system.

Eat more tacos and salsa.

[Nice Guy Eddie 13,528]

Does anyone really believe that pushing plastics or metals into our body doesn't have some long-term impact? Unfortunately we don't always have alternatives. I don't even want to think about microplastics in our food and what that can do to us.

 

[Sawbonz 27,595]

2 hours ago, Reagan1k said:

Cilantro and chlorella are naturally chelating and help to flush metals from your system.

Eat more tacos and salsa.

Both tacos

[Ignatius 4,034]

I just came across this thread; sorry for all of y’all that are dealing with this. My Dad passed away in December after 2.5 years of not knowing who his wife and kids were. Like someone said above, wouldn’t wish that shit on Switzer...

[Armybrat 40,920]

9 hours ago, Nice Guy Eddie said:

Does anyone really believe that pushing plastics or metals into our body doesn't have some long-term impact? Unfortunately we don't always have alternatives. I don't even want to think about microplastics in our food and what that can do to us.

 

Make us shit little toy soldiers?

[RPM 26,360]

On 4/13/2021 at 9:32 AM, Nice Guy Eddie said:

Does anyone really believe that pushing plastics or metals into our body doesn't have some long-term impact? Unfortunately we don't always have alternatives. I don't even want to think about microplastics in our food and what that can do to us.

 

[Apep 645]

19 hours ago, Armybrat said:

Make us shit little toy soldiers?

Kinda. It makes the next generation's taints shorter. /s

[Stringer 1,439]

My wife just flew to Denver to help put her mom in a nursing home.  Her mom is only 65, so it's way too early for this and has been really hard on her whole family.  

She started showing signs a couple years ago, but the last few months she has developed Capgras Syndrome, which is basically Imposter Syndrome.  A couple times a day, she thinks my father in law is an intruder and she screams and curses at him and runs away.  He can't get her back into the house because she thinks he is trying to hurt her.   She then calls whoever is easily accessible on her phone frantic about it and they have to try to talk her back into the house.  Hard on my wife when she is in the middle of a 12 hour work day and has to talk her mom back into her own home.  My mother in law actually called the cops once and they came out to the house, which was an interesting experience for my extremely straight laced father in law.

She also constantly wants to go to a party, and when they get people together to make her happy she asks "where is everybody?"  The "party" is never good enough.  She wasn't a super social person to begin with, so definitely a weird way her dementia has changed her.  My sister in law lives in Denver with her family and she is exhausted because she has to host her mentally deteriorating mom constantly to give her a "party" and she has two little kids and a job.

My father in law is definitely not one to give in or complain, so if he thinks he can't take care of her and she needs to go into a home, I can't imagine how hard it is on him.  

[Sandman 3,415]

About 25-30 years ago, I remember seeing my mom crying at the table, not a huge bawl-fest but she was upset. I didn't say anything, I just found my dad and asked him what was up. He said my mom got a letter from my grandma, telling her that she won't be able to continue to write letters anymore. Her memory problems were just too bad. I was around 20 at that time (selfish moron) and I only met my grandparents 5-6 times, so I wasn't exactly bothered by this but my mom was crushed. She and her mother wrote to each other all the time, they didn't do many phone calls. That was pretty much her only connection to her mom and it was over. Looking back as someone in my late 40s, it's really sad.

[Nicole44 22,078]

I understand completely what y’all are going through. My grandmother died from Alzheimer’s complications and I am currently watching my aunt, who was diagnosed at 68 (though she had been experiencing symptoms now that we look back on it for at least 18 months prior.) Sucks. My aunt was a microbiology major in college. She can’t do many simple tasks we take for granted. Her long term memory is great. Short term is like Dori in Finding Nemo. I totally understand. It sucks. My mom lost her mom and her sister is going away by degrees and they talked at least once a day. Sad shit. Sucks. 

[HouTex 1,894]

We are battling Parkinson’s and dementia for both my father and my MIL. Both at 90. In many cases people are living too long. My father is living his greatest nightmare. Not being independent is way worse than death.

[MaybeACoordinator 8,349]

This is a train I hope I don't ride until the end, if I ever do get aboard. 

[Dennis Taylor 18,876]

Definitely sympathize with all these stories.  It's just amazing in a terrible way how complex dementia is. Just moved my 68 year old sister into a memory care facility.  She held a demanding job with a huge corporation for 30 years with a lot of travel and responsibility for product warehoused globally. At times she thinks she's at her dorm, 50 years ago. Other times she's in an airport waiting for her flight to leave. Or she's visiting our mom (who died over a year ago) at an assisted living facility but doesn't want to disturb her while she's resting. It's almost like her brain needs to reboot. 

We moved her in Thursday and set up her room with pictures of family and little things to make it feel like home. The caregivers said her first night there she told them she was just there for one day. We went on Sunday and she had packed up all the pictures and some of her clothes in a small bag and set it in the closet. Very sad stuff

[Armybrat 40,920]

After 50+ years of handling most of our family financial paperwork/income taxes etc., I have gotten to the point where those chores are getting to be too much for me and I get physically ill just contemplating them.
As a result my wife, who is still very competent, has totally taken over those duties.

Short term memory is noticeably deteriorating, so if I fail to show up on Surly to annoy the youngsters.....

[gaspar 102]

Hang in there, Armybrat, you have plenty more time to annoy the youngsters. 
 

A caution about the memory care facilities for those of you having to go that route - take note of the medicine(s) the memory care facility is giving your loved ones. We found out later that they were giving my dad all kinds of sedatives that would knock him out for large chunks of the day. Not a doctor, so not sure if this was right, but certainly none of us were told that they had started those meds and we didn’t find out until later what they were giving him.

 

[texasjacket 289]

How does one go about getting a diagnosis of these conditions? We have a family member showing the signs but no one is sure how to confirm suspicions. 

[strangulation! 1,716]

make an appointment with a neurologist. go with family member to said appointment, or have another adult accompany your family member.

[Blotto 23,584]

2 hours ago, texasjacket said:

How does one go about getting a diagnosis of these conditions? We have a family member showing the signs but no one is sure how to confirm suspicions. 

With my mom, I seem to recall it as a series of cognitive tests with her performance declining rapidly over a 6-12 month window, combined with other medical tests to rule out other potential causes of impairment. I don't think there is test today that can provide absolute evidence of Alzheimer's like is possible when they autopsy the brain after death. Basically they try to rule everything else out, and if a persons cognitive abilities continue to decline they diagnose Alzheimer's. It sucks.

[Willfully Horn 8,052]

10 hours ago, Blotto said:

Alzheimer's. It sucks.

Understated. 
 

I lost my dad to early onset Alzheimer’s. My empathetic Hook Em to all y’all living through that hell.

[Nicole44 22,078]

11 hours ago, strangulation! said:

make an appointment with a neurologist. go with family member to said appointment, or have another adult accompany your family member.

This. It is what we did with my aunt. My uncle (her hubby) and their daughter went to the appointments and their other daughter (a nurse) was able to participate via phone during the consultations so everyone could hear the information at the same time and ask questions. My cousin said the cognitive tests were heartbreaking. Move the hands on the clock to 10:15. She couldn’t do it. Move the hands on the clock to 12:00. Couldn’t do it. Was given some pocket change. Make $.50. (Even though she had at least two quarters.) couldn’t do it. And so on. 
 

Up until a few months earlier she had been doing most normal activities but as I posted earlier there were signs of things being not right at all. That diagnosis via the neurologist came in March 2019 (though her two daughters had been concerned something was off for months and had pleaded with my uncle who was in denial to get her tested.) she had been taking high blood pressure meds so they thought maybe that was it. But evidence started to pile up she wasn’t right. 
 

I lived in Dallas at the time and I was just going through a separation. Living in the same town, she wanted to drive over (20 minute drive to a place she’d been numerous times) to see me and take me to lunch. She gets a block away from where I am living and calls me and says it’s was too hard to find me and she just was going to turn around and go home. I was like wait! I will come to you. Tell me what you see and I will find you and you can follow me. She said no! It’s too hard. I’m going to head back. That was February 2019. I immediately called my cousins and mom and told them what happened. Then the diagnosis. 
 

obviously after that no driving period and no cooking touching the stove etc...

She has good days and bad days. Late afternoon is the worst time. Sundowning they call it. She cannot do simple mundane tasks and just walks around her house putting on clothes. Taking off clothes and putting on more clothes and then clothes on top of those clothes. Picking up items and moving them to fucked up places. Walking back and forth and back and forth all day. Won’t take naps. She knows there is something wrong with her and on bad days she will pull one of us aside and ask us to kill her. Which ...no. But damn it’s fucking heartbreaking. 
 

Get a neurologist. Do the research. Covid hit and made daycare impossible for a long time but now she is able to go a few days a week and do school she calls it. It gives my uncle a chance to rest and do things. She wakes up at 4:00 am (no matter when she goes to bed and sleeping aids outside melatonin aren’t good for dementia people) and just walks around in the dark for hours until my uncle wakes up to whatever bathroom mess has happened. She can’t bathe or shower on her on so he must help her with everything. She can put on clothes just not in the correct order. She will get out a hairbrush but have no idea what to do with it. Then she can have a conversation with me sometimes and seem ok. It’s bizarre and it sucks to watch her struggle through this rapidly decreasing window of being present. 
 

TLDR: Highly personal stuff about my aunt offered as a means to help someone else who may be seeing the signs but not sure what to do. Every one is different with symptoms like a snowflake. I don’t understand why. My heart breaks for her and her family. Research a neurologist in your area who is a specialist in the field and get a diagnosis if you have a loved one experiencing this. They gave my aunt a year to a year and a half of good memory and we are at 2 thanks to my uncles great care and keeping her fed, clean and comfortable and doing activities with her daily. 

[gaspar 102]

2 hours ago, Nicole44 said:

This. It is what we did with my aunt. My uncle (her hubby) and their daughter went to the appointments and their other daughter (a nurse) was able to participate via phone during the consultations so everyone could hear the information at the same time and ask questions. My cousin said the cognitive tests were heartbreaking. Move the hands on the clock to 10:15. She couldn’t do it. Move the hands on the clock to 12:00. Couldn’t do it. Was given some pocket change. Make $.50. (Even though she had at least two quarters.) couldn’t do it. And so on. 
 

Up until a few months earlier she had been doing most normal activities but as I posted earlier there were signs of things being not right at all. That diagnosis via the neurologist came in March 2019 (though her two daughters had been concerned something was off for months and had pleaded with my uncle who was in denial to get her tested.) she had been taking high blood pressure meds so they thought maybe that was it. But evidence started to pile up she wasn’t right. 
 

I lived in Dallas at the time and I was just going through a separation. Living in the same town, she wanted to drive over (20 minute drive to a place she’d been numerous times) to see me and take me to lunch. She gets a block away from where I am living and calls me and says it’s was too hard to find me and she just was going to turn around and go home. I was like wait! I will come to you. Tell me what you see and I will find you and you can follow me. She said no! It’s too hard. I’m going to head back. That was February 2019. I immediately called my cousins and mom and told them what happened. Then the diagnosis. 
 

obviously after that no driving period and no cooking touching the stove etc...

She has good days and bad days. Late afternoon is the worst time. Sundowning they call it. She cannot do simple mundane tasks and just walks around her house putting on clothes. Taking off clothes and putting on more clothes and then clothes on top of those clothes. Picking up items and moving them to fucked up places. Walking back and forth and back and forth all day. Won’t take naps. She knows there is something wrong with her and on bad days she will pull one of us aside and ask us to kill her. Which ...no. But damn it’s fucking heartbreaking. 
 

Get a neurologist. Do the research. Covid hit and made daycare impossible for a long time but now she is able to go a few days a week and do school she calls it. It gives my uncle a chance to rest and do things. She wakes up at 4:00 am (no matter when she goes to bed and sleeping aids outside melatonin aren’t good for dementia people) and just walks around in the dark for hours until my uncle wakes up to whatever bathroom mess has happened. She can’t bathe or shower on her on so he must help her with everything. She can put on clothes just not in the correct order. She will get out a hairbrush but have no idea what to do with it. Then she can have a conversation with me sometimes and seem ok. It’s bizarre and it sucks to watch her struggle through this rapidly decreasing window of being present. 
 

TLDR: Highly personal stuff about my aunt offered as a means to help someone else who may be seeing the signs but not sure what to do. Every one is different with symptoms like a snowflake. I don’t understand why. My heart breaks for her and her family. Research a neurologist in your area who is a specialist in the field and get a diagnosis if you have a loved one experiencing this. They gave my aunt a year to a year and a half of good memory and we are at 2 thanks to my uncles great care and keeping her fed, clean and comfortable and doing activities with her daily. 

Absolutely all of this. Each person has different symptoms, but they all seem to revolve around some WTF actions that just seem out of the norm. It much more than just memory lapses or forgetting why you walked into a room or what you were doing - it’s truly odd behavior. 
 

As far as I know, there is no medical test for dementia or Parkinson’s, but they are diagnosed through clinical observation and physical “tests”, like those described above. It definitely sucked for my dad, who was in such good shape all his life, but during the last few years, could not lift a spoon to feed himself. 
 

Another bit of advice is to closely monitor the caregiver (usually the spouse) and my mom in our situation. She had to do everything for my dad, feed him, get him dressed, shower him and she’s getting up there in age, so it really takes a toll on the caregiver. We finally decided that she needed help and got a series of nurses to help pretty much around the clock (after going the memory care route). If you’re financially able to swing that, I would advise that instead of the memory care home. 

[Nicole44 22,078]

5 hours ago, gaspar said:

Absolutely all of this. Each person has different symptoms, but they all seem to revolve around some WTF actions that just seem out of the norm. It much more than just memory lapses or forgetting why you walked into a room or what you were doing - it’s truly odd behavior. 
 

As far as I know, there is no medical test for dementia or Parkinson’s, but they are diagnosed through clinical observation and physical “tests”, like those described above. It definitely sucked for my dad, who was in such good shape all his life, but during the last few years, could not lift a spoon to feed himself. 
 

Another bit of advice is to closely monitor the caregiver (usually the spouse) and my mom in our situation. She had to do everything for my dad, feed him, get him dressed, shower him and she’s getting up there in age, so it really takes a toll on the caregiver. We finally decided that she needed help and got a series of nurses to help pretty much around the clock (after going the memory care route). If you’re financially able to swing that, I would advise that instead of the memory care home. 

So sorry. My family worries the most about my uncle because in many cases it is the care giver who passes away first. My aunt and uncle had/have a very close relationship. Best friends and did/do everything together. When I was little it was like they were my “love map” for lack of a better word for a great marriage.
 

So he feels guilty for what she is going through, feels depressed that his partner and love is slipping away and is stressed on the daily from all the new challenges that her disease presents. He also feels guilty for getting annoyed or frustrated with her. Getting her to follow simple instructions is challenging and she gets very upset being told to do things. Like sit down at the table to eat. For some reason sitting down is hard for her. The act of sitting down. Not like it’s physically painful but it’s like she sees us all sitting down and can’t figure out how to sit down at the table or on the couch. It’s like herding cats. 

He has finally realized the toll it was taking on him this year. Hence, once they both got vaccinated he and his daughters were researching Alzheimer’s places for her to try and get her used to daycare a few days a week. He has a housekeeper to assist with things around the house and they have had a couple of caretakers come to the home the last few months a few days a week to help him with her.
 

But she runs each person off for different reasons. she always wants him to do all things. And she views each person as an impediment between her and her and my uncle.  Also, it’s very expensive and that was another reason why their immediate family made the call to do daycare once it was available. That is also expensive but there are no cures for her and if she continues to live for years after her mind is completely gone she will have to be in a place. The hope is she will get used to it for a transfer to full time. But I know that as long as my uncle can see that spark of recognition of him and their old life he will never pull the trigger on putting her in there full time. 
 

He has had heart problems since 2005 so we all worry about his health. Various family members (myself included) have all kept her for weeks at a time because my uncle was still working up until mid last year when he was basically forced to retire. She gets incredibly anxious without him. Can’t understand the concept of days or time. When we travel to see them if he leaves to go get something out of his truck in the driveway she gets anxious. Either follows him or paces back and forth near the door.  If he does anything where he is not in her line of sight she gets upset and frustrated. 
 

He only really gets a moments peace at night when she goes to bed. But like I said she won’t nap during the day and she gets up every day at like 4/5 am and walks the house in the dark for hours having created 90% of the time a huge bathroom mess that he has to take care of when he wakes up at like 6 or 7. Then he cleans that up. Cleans her up. Gets her dressed and then makes her breakfast before he even has a chance to brush his teeth. 
 

I do think it is good to keep them as long as you can if the primary caretaker is physically able and ideally if  you have help from other family and hired caretakers. But the toll it takes on the caregiver is huge. It’s a shit situation.

As far as a diagnosis, she had a brain scan with her neurologist and it was determined she had vascular dementia. It has since progressed to Alzheimer’s. She still knows all of us but it’s starting to fade. And you can tell. One day she will wake up and not know my uncle or she won’t wake up at all. This may sound horrible but I hope that she doesn’t wake up at all. My uncle is going to try and do this as long as there is memory and as long as he has those times each day or a good day where he sees sparks of her and the life they once shared still in there but i fear once she has to go full time to a place it will kill him. Or if she lingers like this another 18 months.  Uggh this sucks. 
 

[Wally Fairway 5,589]

I'm going to take my mom to lunch again today, hopefully she remembers who I am this time. Sometimes she does, sometimes she thinks I'm one of my brothers, someone's she tells me stories about her kids as if I was a stranger.

My Dad had physical ailments, and didn't share everything he was dealing with Mom's mental deteriorating condition. Then he passed a year ago this week due to complications from his aortic aneurysm bypass.

There are no words to properly describe watching your parent or other loved one slip down this path. Slowly at first, almost imperceptibly. My only advice is to get proper medical advice, do some reading to better understand what is happening and what will happen. And tell them you love them every chance you get; and hold onto your past memories as long as you can.

[Apep 645]

Had a long talk with my uncle yesterday. Abuelita is going downhill. She’s been living with him for at least a couple of years, but during the week she’ll stay at her house with a caretaker. He is at wit’s end, due her getting quarantined for a few days due to a fever, having to get a COVID test, and waiting for the results. He’s somewhat old-fashioned and very stoic. He was overwrought with emotion and damn near almost crying. After I asked about how close she was to needing to be in a home and reiterating that the rest of the family supports him 100% in whatever decision he makes at whatever point, he started calming down and we were able to talk about other stuff. (She’s at the still knows who everyone is, but can’t remember or learn things, thinks the world runs like it is 1960 and has trouble caring for herself stage.) 

[texasjacket 289]

Okay. So a neurologist makes this diagnosis thanks for that info. My concern is getting the person to weather through all this tests/examinations before getting to the diagnosis. I know that is where I will lose their willingness 

[Nicole44 22,078]

3 hours ago, texasjacket said:

Okay. So a neurologist makes this diagnosis thanks for that info. My concern is getting the person to weather through all this tests/examinations before getting to the diagnosis. I know that is where I will lose their willingness 

Yes. They will first do the cognitive tests. The tests will determine pretty well for the specialist (neurologist) whether the brain scan is necessary. The neurologist should have a clear idea right away from the cognitive tests. It’s not a several day deal. A couple of hours and a loved one or two should be with that person for the appointment and throughout the consultation.
 

Getting the diagnosis where that person can hear it in the presence of other loved ones and can also ask for questions IS  KEY  to getting them to get/ participate in further tests or the brain scan if that becomes necessary.
 

My aunt was much higher functioning then (compared to 80% of people in her current situation she is still higher functioning than most) and when she absolutely FAILED all the cognitive tests she want the scan to find out what was causing her to be so off. She went from not wanting to get a diagnosis to really wanting it. 

Edited May 22, 2021 by Nicole44

[Reagan1k 3,024]

The cognitive tests are baffling and fascinating at the same time,   It does take a trained medical provider to administer and interpret them.  The patient can compensate and do things to make a lay person question their own suspicions.

I have a family member who can’t tell or make time on a clock, thinks a Bush is still president, but can do complex mathematical functions.   You let him “run the test” and he can prove to you how sharp he is and make you think you’re overreacting.   A neurologist can peel the onion back and tell everyone the truth. 

[Nicole44 22,078]

23 minutes ago, Reagan1k said:

The cognitive tests are baffling and fascinating at the same time,   It does take a trained medical provider to administer and interpret them.  The patient can compensate and do things to make a lay person question their own suspicions.

I have a family member who can’t tell or make time on a clock, thinks a Bush is still president, but can do complex mathematical functions.   You let him “run the test” and he can prove to you how sharp he is and make you think you’re overreacting.   A neurologist can peel the onion back and tell everyone the truth. 

Yep. Exactly. The neurologist will know. The patient may not accept the results but with loved ones present during testing they can’t hide it. My aunt went from “there is nothing wrong with me” to “they are wrong about what is wrong with me” to “I want more tests.” 

[Reagan1k 3,024]

Patients often develop coping and compensating skills, sometimes subconsciously.  Saying things like, “remind me” or “I may have already asked you, but..”.  They will also redirect conversations to things the can remember when they can’t keep up with or understand a present conversation.

“grandmother, what did you have for lunch?”  
“Have I ever told you about the time I stayed in the Intercontinental on Michigan Avenue and had lunch with your aunt Gertrude?”  

[Nicole44 22,078]

1 minute ago, Reagan1k said:

Patients often develop coping and compensating skills, sometimes subconsciously.  Saying things like, “remind me” or “I may have already asked you, but..”.  They will also redirect conversations to things the can remember when they can’t keep up with or understand a present conversation.

“grandmother, what did you have for lunch?”  
“Have I ever told you about the time I stayed in the Intercontinental on Michigan Avenue and had lunch with your aunt Gertrude?”  

Very good points. 

[Dbeasy 15,095]

For those struggling with a diagnosis for a relative acting strangely, we had the same issue with my FIL. He went to many doctors for several years. Finally, one trip to the Mayo Clinic confirmed Lewy Body disease, which includes hallucinations and being afraid of people you know, combined with Alzheimer’s like symptoms and Parkinson’s like symptoms. An absolutely terrible disease. 

[Nicole44 22,078]

I am so sorry @Dbeasy that’s awful. 💙

Also, if anyone has a loved one in the Dallas area that needs to be tested, I am happy to provide the name of the neurologist who diagnosed my aunt. One of the foremost experts in this field. 
 

Or any other questions: it’s cool to pm me on this matter. I’ll keep it confidential. I have no problem providing whatever information I have. 

[Reagan1k 3,024]

I will add this-  if the loved one is still driving before the diagnosis, be damn sure you have a plan to deal with that the moment a diagnosis is confirmed.

No one wants to be in a situation where you had knowledge of a medical diagnosis of any diminished capacity prior to an accident.

That would be an expensive negligence claim on top of the moral/ethical obligation to prevent a potentially tragic outcome.

The taking of keys is often a difficult battle, and you don’t have time to ease into it once a condition is confirmed by a doctor. 

[Nicole44 22,078]

Other asides:

Reading is your friend on this. Learn about sundowning. Restless leg syndrome. Why night lights are a good thing in their room at night. 
 

Diet is also a big thing. The Mediterranean diet (if they have no allergies/problems eating that) is the best. Limiting sweets. Food is big deal. My aunt probably weighs a 100 pounds at 5’6” but my uncle is feeding her all the damn time. 
 

Routine is key. Same with walking or exercise if they are able. Cognitive activities are important as well. 
 

Melatonin only for sleeping no sleeping pills. Bed time routine also important as much as possible. 
 

If the person is married make sure like in my uncle’s case (he has heart problems but is of sound mind) that his will specifies someone (daughter) other than my aunt to make all decisions about matters concerning finances and her care if he were to die first or become incapacitated. It has to be done. It’s a real shit show if that’s not ironed out. 

[Nice Guy Eddie 13,528]

Illnesses like cancer don’t necessary scare me but neurological issues like ALS or Alzheimer’s do. Very much. 

[Cheeseweasel 26,438]

On 5/22/2021 at 8:32 AM, Wally Fairway said:

I'm going to take my mom to lunch again today, hopefully she remembers who I am this time. Sometimes she does, sometimes she thinks I'm one of my brothers, someone's she tells me stories about her kids as if I was a stranger.

Sorry, brother. This was the hardest part I went thru with my Mom. We'd talk on the phone and after a few minutes, she'd forget it was me. She'd try to hide it, but it was obvious. Towards the end, I'd visit and she had no clue who I was. I can't imagine not knowing your own child. Fuck this disease so hard.

[MoJames 8,256]

For those asking about work up.

The MOCA/MMSE that is done to test cognition is generally not that necessary. The diagnosis of Alzheimer's Dementia is very much a clinical diagnosis that can often be made communicating with the patient and the family. MRIs are rarely helpful for AD, they can be helpful for a Frontotemporal Dementia (generally accompanied by inhibition/language difficulties). The presentation for Lewy Body Dementia is generally associated with hallucinations and movement disorders (Think Parkinson's disease with dementia). 

The most important part of getting a family member evaluated is to go with them. It is beyond unhelpful to see a patient with cognitive difficulties without anyone else at the visit.

There are now some testing that can be done with Lumbar Puncture to confirm a diagnosis of AD, but often are not pursued simply because the options of treatment are not great and putting someone with memory concerns through a lumbar puncture is difficult/harmful.

Aricept and Namenda are the two medications we generally use, both of which have limited side effects. General rule of thumb is if you feel the patient has or could develop AD, these medications are meant to slow the progression. Nothing at this point stops progression of AD. So, if you feel it is possible that the patient has AD based on history and clinical presentation, you should start them on the medications if they are amiable. 

AD is a shitty shitty disease, mainly for caretakers. Often by the time we are seeing the patient's in the Neurology clinic, they are past the point of caring about their memory loss. My suspicion shoots through the roof when the patient is agitated that they are at the doctor and states their memory is fine and the family member quickly jumps in to suggest otherwise.

There is a great book called the 36 hour day that I recommend for family members of patient's with AD. It provides plenty of tools to help with the difficult task of caring for someone with memory loss.

Edited May 26, 2021 by MoJames

[Nicole44 22,078]

@MoJames

Thanks for the book recommendation. I will definitely get one for my family. My aunt has become increasingly difficult to deal with of late. 
 

The other day, my cousin Ashley and her daughter Maddie (4 going on 5) were with my aunt and were going to take her to run some “fun” errands and eat lunch. Ashley gets Maddie in her car seat and my aunt is just standing in the driveway outside the car. Won’t get in the front seat. Ashley is like, “Mom, get in the front seat.” Stands next to her with the front passenger seat door open and moves to help my aunt. My aunt turns around and runs down the street and into traffic. Ashley chased her down and she was not hurt.

The other day she started beating on my uncle’s back for no reason. The progression of her diseason has been slowed as mentioned by medication but there is very little we can all do to keep her from getting to the point where daycare becomes her living in the home full time. She has been acting like a pissed off child about daycare and has been lashing out which is understandable. Her ways of lashing out are to be physical with my uncle or to make a hideous bathroom mess that he is forced to clean up and then clean her up.

Uggghhhh.

Edited May 26, 2021 by Nicole44

[Liquor and Poker 3,659]

My FIL had vascular dementia. Over about a 4-year period he went from walking and talking fine to bedridden and unable to comprehend anything.  Then he held on for 6 more years.  MIL converted the living room into a hospital room for him and slept on the sofa.  He'd wake up screaming, or just suddenly relieve himself and not realize it. Wife drove Dallas-Houston every weekend to help until we realized it was just too much and moved down here.

MIL spent 6 years as a 24/7 nurse and it basically spent all the emotional and physical energy she had.  It's been 3 years since he passed and she's still not back to anything close to her former self.

[HouTex 1,894]

Absolutely all of this. Each person has different symptoms, but they all seem to revolve around some WTF actions that just seem out of the norm. It much more than just memory lapses or forgetting why you walked into a room or what you were doing - it’s truly odd behavior. 
 
As far as I know, there is no medical test for dementia or Parkinson’s, but they are diagnosed through clinical observation and physical “tests”, like those described above. It definitely sucked for my dad, who was in such good shape all his life, but during the last few years, could not lift a spoon to feed himself. 
 
Another bit of advice is to closely monitor the caregiver (usually the spouse) and my mom in our situation. She had to do everything for my dad, feed him, get him dressed, shower him and she’s getting up there in age, so it really takes a toll on the caregiver. We finally decided that she needed help and got a series of nurses to help pretty much around the clock (after going the memory care route). If you’re financially able to swing that, I would advise that instead of the memory care home. 

My dad has Parkinson’s and this is pretty much our current situation. It’s just horrible.