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Dementia and Alzheimer's


Reagan1k

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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.

 

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Any early onset dementia is a bitch more so than other forms, Alzheimer's or FTD.  I spend more time working with the family than the patient as progression occurs.  One of the best books I've come across for patients is the 36 hour day.

Amazon

There is quite a bit of research ongoing, but nothing promising other than techniques to attempt to diagnose early as the feeling is by the time the diagnosis is made, it is at a point where you are past the treatment.  Here's hoping that with newer tools in the not too distant future, we are able to start to help the patient's in these situations.

 

Thoughts and prayers to your friend and his family.

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That sounds awful.  My MIL has had pretty advanced dementia for several years.  She is the last grandparent my kids have left.  And she recognizes them about half the time, and the other half she creates wild scenarios in her head that don't have any basis in reality.  It's brutal for her, and my wife is crushed by it.  My kids try to understand.  But it's tough.

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That's terrible to hear. We don't have a history of it in my family, either side, knock on wood, but I saw it take one of my SIL's way too early. It put a terrible strain on my brother trying to care for her and maintain his career/job. His employer worked with him, really bent over backwards to make sure that he could be there for her and still be an asset to the company and fulfill his obligations there. I think he worked from home 3-4 days a week the last year or two of her life. She was a good dozen years older than your friend when it became obvious and diagnosed. Fuck man, I hate even thinking about it.

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Lewy Body Dementia (LBD)
Not talked about much as it’s mistaken for Parkinson’s and Alzheimer’s because of similar symptoms, but LBD is the 2nd most common form of Dementia. 
 

FIL had it. Terrible terrible disease. He slowly started having minor symptoms in his late 40’s. For example, he developed the yips in putting. It was a long slow decline with a miserable end. Tough tough stuff.
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My grandmother on my fathers side had Alzheimer’s.  About 10 years of decline and the last few years where she couldn’t do anything.  My Grandfather would say that while she didn’t know his name he could tell that his presence in a room made her feel better.  I think that was more for his benefit to believe that.

My Dad is now taking care of my Mom who is mid-stage Alzheimer’s.  Last time we visited a few months ago she was good with my identity as well as my boys and wife.  However, at one point she pulled my wife aside and asked “Who is that man?  He is very nice and seems to know all my family.”   It was my Dad.   My Mom has a good attitude, which is nice as some patients become angry with their mental decline.   When told it was her husband of 50+ years she said, “Well that is good!  It’s like a get a new husband!”

 

shitty disease.  Slowly steals your loved ones and leaves a shell of the person.

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The impact on individuals and families is huge. I've seen it up close in family, I've seen absolute tragedies in early onset cases. And beyond that, its gonna be a major population health issue. I've published a bit of research on the impact of AD on both patients and caregivers, and have a study in planning phases at the moment.  AD may be what actually breaks our healthcare system. Direct healthcare costs over $1T within a few decades, and much of those costs will fall to medicare and medicaid. We have no effective medication treatments. We're living longer, prevalence stair steps across age bands. Not a good situation unless we have some major breakthrough.    

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2 hours ago, Dbeasy said:


FIL had it. Terrible terrible disease. He slowly started having minor symptoms in his late 40’s. For example, he developed the yips in putting. It was a long slow decline with a miserable end. Tough tough stuff.

I think my FIL has LBD but it’s hard to tell. Still early 

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I think my FIL has LBD but it’s hard to tell. Still early 

He went to doctors for years and no one could diagnose it. They kept misdiagnosing it. He finally went to Mayo Clinic and they figure it out. Highly highly recommend you go there. It will be covered by insurance most likely. That place is incredible.
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Runs in my family on my dads side. There are some breakthroughs in testing and I recently read an article that states it can potentially be tested for in the saliva and the protein that is prominent in an Alzheimer’s patient’s saliva is present their entire life. I can’t remember if there was a treatment option in that article but it was very promising and testing is available right now. The problem for a guy like me is l, do I really want to find out I’ll have Alzheimer’s when I’m older as a 33 year old? That would be a fucking bummer. 

We give a ton to this research because when you couple Alzheimer’s with other end of life issues (cancer and organ failure) it is just devastating for the patient and the family.  

Hopefully with the development of CRISPER we will wipe this disease off the planet. 

Edited by Jhawk
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My dad's mom has Alzheimer's, he has Parkinson's and early onset dementia, and I am fucking scared of what I'll have to deal with when I start getting older. T&P to y'all who have to help family through it as well. 

Also, do any of y'all know of a life insurance policy or something I could start investing in now to protect my future family and soon to be wife from crippling medical bills? By far that's been the toughest thing for my parents 

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Grandmother has dementia. When my father passed, she kept forgetting and asking where he was. It only happened a couple times when we just started lying to her so she didn't have to relive finding out her son was gone over and over. It's heartbreaking.

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1 hour ago, XYZ said:

If some day I get diagnosed with Alzheimer’s or some other degenerative neurological disease, I’m offing myself before I become a burden to my family.

Absolutely this.  I would rather them remember me as a happy and functional person that offed himself than a shell of what I used to be, and I don't want anyone to have to take care of me like I am a baby again.  

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MIL has it, we just realized it had gotten from early stage to middle stage. It can be very frustrating because she hides it or is in denial about it and will make up stories about anything she doesn't remember and/or argue with us about it instead of saying she can't remember. We also need to learn more on how to deal with issues like these.

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1 hour ago, Captainant said:

My dad's mom has Alzheimer's, he has Parkinson's and early onset dementia, and I am fucking scared of what I'll have to deal with when I start getting older. T&P to y'all who have to help family through it as well. 

Also, do any of y'all know of a life insurance policy or something I could start investing in now to protect my future family and soon to be wife from crippling medical bills? By far that's been the toughest thing for my parents 

Long term care insurance is the solution you seek.  It's expensive and can be complicated but that's about all you can do, other than pile up a shit-ton of assets while living and be ready to spend it down if you require long term care.

Some newer life insurance contracts offer living benefits that allow you to use up some of the death benefit in the event of certain illnesses.   There are also policy loans against cash value life insurance contracts that could help offset long term care costs but either of those will decrease the death benefit which may or may not cause other problems for your family after death.

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Just now, Viper said:

MIL has it, we just realized it had gotten from early stage to middle stage. It can be very frustrating because she hides it or is in denial about it and will make up stories about anything she doesn't remember and/or argue with us about it instead of saying she can't remember. We also need to learn more on how to deal with issues like these.

FIL compensates and covers up....also gets frustrated when that doesn't work.  It's baffling how they have the cognitive ability to know to hide it and often can, yet simple things become impossible.

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I think that people are embarrassed and that is why they try to hide it.  My uncle is 57 and he is a very forward and practical guy.  He knows he is losing his memory and he willingly admits it.  He carries a day timer with him everywhere (he loses it often) to keep notes and schedules.  He has stopped working (he basically retired at age 50) and is lapping up time with the kids he had at age 43 and 45.  It is a weird thing to talk with him about it because he knows it is there, though he hasn't been diagnosed to my knowledge, and he doesn't make excuses for it.  Almost morbid but in a way that is soothing to those of us around him.  When he doesn't remember something he should he will flat out say it.  When you ask him to do something he will usually tell us to text him and his wife and maybe one of his kids.  He lives down the street from my parents so his kids are always texting my parents about making sure they get picked up from activities when their mom isn't there to do it.  For example, I was with my dad and uncle the other night and my cousin text my dad to make sure my uncle remembered to pick him up from his golf lesson.  He's either going downhill at an early age or he is a genius and has convinced everyone that they need to be his daily reminder of what tasks need to be done.

I have a feeling that those afflicted can sense the issue early on but chalk it up to just not recalling a detail here or there.  Almost like not being able to find your phone or keys before you are walking out the door.  Then you make habits to self help, like leaving your keys by the garage door.  You don't see many of your friends and family enough for them to point out during story time that you completely misremember something so family/friends don't point it out because they don't see you enough to know it happens often.  By the time someone finally says something you go through the tough "I'm not sick" phase.  By the time you get into the doc it is too late and you are trying to slow progression instead of trying to keep a healthy mind.

Such a sad thing to watch unfold.  My family is big drinkers too and I can't imagine that social drinking every week helps the issues that we see in our bloodline.

Edited by Jhawk
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Dad was diagnosed with ALZ in early 2015 and Mom was diagnosed with lymphoma that fall and passed away in January 2017 (F cancer). Dad is by himself in our hometown and has caregivers that come every day  and help out with meals and housework.  He can remember what happened when he was a kid but he can't remember what day it is or what he had for breakfast.  He is finally realizing he can't remember stuff but will not acknowledge that he has Alz even after his sister suffered through it for 10 years.   Sometime this year or next we will probably have to move him into fulltime care.

 

This is a song from one of my favorite bands.  The lyrics really hit home.

 

 

 

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MIL has Alzheimers. It’s like their mind dies while the body keeps living.

 

Devastating disease. I miss my MIL dearly...even though she’s still alive..

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On 5/18/2018 at 11:10 AM, Jhawk said:

I think that people are embarrassed and that is why they try to hide it.  My uncle is 57 and he is a very forward and practical guy.  He knows he is losing his memory and he willingly admits it.  He carries a day timer with him everywhere (he loses it often) to keep notes and schedules.  He has stopped working (he basically retired at age 50) and is lapping up time with the kids he had at age 43 and 45.  It is a weird thing to talk with him about it because he knows it is there, though he hasn't been diagnosed to my knowledge, and he doesn't make excuses for it.  Almost morbid but in a way that is soothing to those of us around him.  When he doesn't remember something he should he will flat out say it.  When you ask him to do something he will usually tell us to text him and his wife and maybe one of his kids.  He lives down the street from my parents so his kids are always texting my parents about making sure they get picked up from activities when their mom isn't there to do it.  For example, I was with my dad and uncle the other night and my cousin text my dad to make sure my uncle remembered to pick him up from his golf lesson.  He's either going downhill at an early age or he is a genius and has convinced everyone that they need to be his daily reminder of what tasks need to be done.

I have a feeling that those afflicted can sense the issue early on but chalk it up to just not recalling a detail here or there.  Almost like not being able to find your phone or keys before you are walking out the door.  Then you make habits to self help, like leaving your keys by the garage door.  You don't see many of your friends and family enough for them to point out during story time that you completely misremember something so family/friends don't point it out because they don't see you enough to know it happens often.  By the time someone finally says something you go through the tough "I'm not sick" phase.  By the time you get into the doc it is too late and you are trying to slow progression instead of trying to keep a healthy mind.

Such a sad thing to watch unfold.  My family is big drinkers too and I can't imagine that social drinking every week helps the issues that we see in our bloodline.

It’s particularly difficult to recognize in people you don’t see all that often.  My wife’s great uncle with Alzheimer’s lived with her great aunt until the great aunt passed away from cancer.   We went out to their farm to ready it for an estate sale, and goddamn.  In the barn there were shoeboxes full of disposable razors.  Each one had a tag on it telling how many times it had been used and from what dates.   Many other similar things that indicated he knew what was happening but couldn’t do a damned thing.   He was a golden gloves boxer in the Army.  I have all his gear.   Always wondered if that precipitated it.  

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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.

 

That was a brutal read.  I had no clue it could strike that early.

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23 hours ago, SubliminalHorn said:

I would definitely have everything set up so that I would be going out on my own terms before things got really bad. I would never burden my family with taking care of me. Say our goodbyes, share some tears, and end it. 

I get that sentiment, but the problem is that this is a different disease than one of a purely physical nature......The diminishing cognitive skills and associated frustration and paranoia make a well thought out "self exit" nearly impossible when the time comes.  A sufferer can't make that decision when the time comes.

 

 

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1 hour ago, Reagan1k said:

I get that sentiment, but the problem is that this is a different disease than one of a purely physical nature......The diminishing cognitive skills and associated frustration and paranoia make a well thought out "self exit" nearly impossible when the time comes.  A sufferer can't make that decision when the time comes.

 

 

This exactly.  Dad always said if he got down to where he was gonna have to be put in a home or extended care that I had better leave him with a gun.  That time has passed and all his firearms are locked in a safe and he doesn't remember the combination to that safe  nor has he even brought it up since being diagnosed.   Kinda of the same thing with the sets of cars keys that he "lost".

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My dad died with dementia. He was in Viet Nam during operation Ranch Hand and was exposed to Agent Orange.   He never got any cancers but he was ate up with the  vascular issues AO caused.

The slow downward spiral was unnoticed at first and then he started tumbling downhill mentally and the last 6 months was ugly for him and heartbreaking for everyone else. 

Bury hatchets, come clean, mend fences while you can.  Don't let a day go by without expressing your love while they can understand it. 

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Grandmother died two years ago at 99 years of age.  She had severe dementia.  She didn't die of it because no one really does but damn was it hard.  Grandfather died 4 months before she did at 98 and physically he was shot but he had his full mind until the last day.  I'll take that any day.  I've told my wife to never pull the plug as long as I have my mind.  

As for the OP and some other posts, early onset is different than garden variety dementia.  It hits earlier and harder.  There are some other differences that I don't remember but believe it not, they're totally different diseases.  Another aspect that was brought up is long term memory vs short term memory.  For some reason, long term memory remains intact.  People can remember what they did 60 years before but not what they had for lunch.  No one seems to know why.

Regardless, it's a god awful disease.  It's the one I worry about more than any other.  Others worry about dying in their 50's of a heart attack.  I worry about dying at 105 and not remembering anything for the previous 15 years.  Not sure which is worse.

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10 hours ago, Aqua Buddha said:

Grandmother died two years ago at 99 years of age.  She had severe dementia.  She didn't die of it because no one really does but damn was it hard.  Grandfather died 4 months before she did at 98 and physically he was shot but he had his full mind until the last day.  I'll take that any day.  I've told my wife to never pull the plug as long as I have my mind.  

As for the OP and some other posts, early onset is different than garden variety dementia.  It hits earlier and harder.  There are some other differences that I don't remember but believe it not, they're totally different diseases.  Another aspect that was brought up is long term memory vs short term memory.  For some reason, long term memory remains intact.  People can remember what they did 60 years before but not what they had for lunch.  No one seems to know why.

Regardless, it's a god awful disease.  It's the one I worry about more than any other.  Others worry about dying in their 50's of a heart attack.  I worry about dying at 105 and not remembering anything for the previous 15 years.  Not sure which is worse.

Sounds like its already too late for you.

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I gots the slow kind. Where are my pants?

Seriously, it's getting to the point where I'll lose track of a thought that I want to bring up in a conversation, struggle for a while to recall what it was, then may or may not remember it in a timely manner.  This is occurring more often in recent months. 

My short term memory started deteriorating several years ago, and now the long term seems to be following suit. I can't even recall half of the assholes that used to argue with me at the other site.

Side benefit - at least I get to sleep with a different woman every night.

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  • 4 weeks later...

Well, my friend (from the OP) has been granted status as permanently disabled by the Social Security Admin., so he is now entitled to federal benefits which I think is the equivalent of what he would normally receive from Social Security if he reached normal retirement age.  That should help a lot with regard to keeping the household afloat financially.

I'm not sure what the impact is one way or the other with regard to his working in food service at the nursing home.  I hope he can still do that at least part time to stay active and productive for the time he has left.

He doesn't have much of a grasp on how sick he is, and that seems to be both a blessing and a curse.

His kids are taking it very hard and his wife is basically just in management mode. 

This disease sucks and I'm praying for him along with prayers for an eventual cure or vaccine for future potential victims.  Damn we need that badly!

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Heading to the in-laws this weekend with my wife to figure out how to help her mother, who is 68 and has had dementia for over a decade. She has been in absolute free fall the last 3 or 4 months and almost certainly needs 24-hour care at this point. Thank God my wife is adopted. I could not have imagined how devastating this disease is until seeing its impact first-hand. Just a horrible situation and there seems to be so little you can do to make anything better.

Sent from my SM-G950U using Tapatalk

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  • 7 months later...
On 5/17/2018 at 6:33 PM, ABSR said:

My grandmother on my fathers side had Alzheimer’s.  About 10 years of decline and the last few years where she couldn’t do anything.  My Grandfather would say that while she didn’t know his name he could tell that his presence in a room made her feel better.  I think that was more for his benefit to believe that.

My Dad is now taking care of my Mom who is mid-stage Alzheimer’s.  Last time we visited a few months ago she was good with my identity as well as my boys and wife.  However, at one point she pulled my wife aside and asked “Who is that man?  He is very nice and seems to know all my family.”   It was my Dad.   My Mom has a good attitude, which is nice as some patients become angry with their mental decline.   When told it was her husband of 50+ years she said, “Well that is good!  It’s like a get a new husband!”

 

shitty disease.  Slowly steals your loved ones and leaves a shell of the person.

Quoting myself to bring this back up.

My Mom is worse but not massively so than before...however, my wife was told by her Dad today that he is not letting my MIL drive anymore as she has forgotten how to drive and if she does drive she can't get home.  No official diagnosis, but my wife and I both know where this is going.

FIL is a great guy (MIL, not always so much), but I am not sure if he understands the magnitude of what is coming.   I guess it is really hard to truly understand, and also it is hard to accept the shit show that is coming. 

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20 minutes ago, ABSR said:

Quoting myself to bring this back up.

My Mom is worse but not massively so than before...however, my wife was told by her Dad today that he is not letting my MIL drive anymore as she has forgotten how to drive and if she does drive she can't get home.  No official diagnosis, but my wife and I both know where this is going.

FIL is a great guy (MIL, not always so much), but I am not sure if he understands the magnitude of what is coming.   I guess it is really hard to truly understand, and also it is hard to accept the shit show that is coming. 

Damn.  Hate to hear this.  Yep, it's coming.  And it's awful.  Prayers for you and your wife as dealing with this is extraordinarily difficult.  

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My dad's driver's license was to expire later this month but we talked him into surrendering it and just getting a TX ID card last week. We finally got him to acknowledge that he wasn't really driving anymore and didn't need to keep paying insurance on 2 vehicles.  His suburban has not moved in two years after he "lost" the keys to the club steering wheel lock bar and I think that he drove mom's car out once last summer to go buy lawn mower gas after his caregivers left for the day.   He was kind of bummed out at the thought of losing his independence but once we started cleaning out his Suburban he warmed up to idea and got on board with selling it. 

Our next step is probably increase the time his caregivers are with him during the day and installing some cameras at the house so we can visually see what's going on during his days.  he is pretty adamant about not moving to a facility and that he wants to die in his own house but as he progresses further he will need additional help above what the current caregivers can provide.

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  • 2 weeks later...

I started this thread discussing my friend who isn’t even 50 yet, but my FIL also has Alzheimer’s.  

Driving is a big deal for most at first. 

keeping then out from behind the wheel  is easier said than done.  

Find a support group for anyone MIL or wife or you who is giving steady care.  It helps process the frustration and corresponding guilt. 

Watch the finances - online shopping, predatory billing by charities or political groups, and online porn-  yep.  Porn is a big deal as the brain reverts to primary functions and a lot of older men become very sex-driven.  Even if they are hitting free sites, they are opening up the computer to viruses etc.  not to mention it can be devastating to the wife. 

Make sure MIL is taking time for herself to decompress, eating right, and getting exercise.  This disease slowly kills the caregiver too if one isn’t careful. 

Read some online resources about dealing with the patient.... how to answer questions, what to say and not say, etc. 

a steady routine is helpful to normalize life.  Afternoons and evenings are hardest-  see sundowning. 

Others can chime in with more advanced stage advice.  May God bless your family.  

 

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1 hour ago, Reagan1k said:

I started this thread discussing my friend who isn’t even 50 yet, but my FIL also has Alzheimer’s.  

Driving is a big deal for most at first. 

keeping then out from behind the wheel  is easier said than done.  

Find a support group for anyone MIL or wife or you who is giving steady care.  It helps process the frustration and corresponding guilt. 

Watch the finances - online shopping, predatory billing by charities or political groups, and online porn-  yep.  Porn is a big deal as the brain reverts to primary functions and a lot of older men become very sex-driven.  Even if they are hitting free sites, they are opening up the computer to viruses etc.  not to mention it can be devastating to the wife. 

Make sure MIL is taking time for herself to decompress, eating right, and getting exercise.  This disease slowly kills the caregiver too if one isn’t careful. 

Read some online resources about dealing with the patient.... how to answer questions, what to say and not say, etc. 

a steady routine is helpful to normalize life.  Afternoons and evenings are hardest-  see sundowning. 

Others can chime in with more advanced stage advice.  May God bless your family.  

 

All of this...

and patience.    Be patient with the soon to be wife, and patient with the M-I-L, and be patient with her dad.   The stress is unreal.  It’s going to bring the women to a rage, and to tears, and the same with her dad.  It’s not easy at all, but if you’re in it for the long haul, there’s no bigger commitment aside from your own marriage.  But make sure you make time for that, and make sure the parents understand that as well.  I’ve seen it ruin marriages dealing with one set of parents’ dimentia/ALZ.   You need to sit and talk about it with your fiancé.   Let her know you’re in it, because it’s not easy.   

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Quote

Daily Movement — Even Household Chores — May Boost Brain Health In Elderly

Quote

Want to reduce your risk of dementia in older age? Move as much as you can.

We've all heard about techniques to get us more physically active — take the stairs, park the car a bit further from your destination, get up and march in place for a minute or two when standing or sitting at a desk.

Now a study finds even simple housework like cooking or cleaning may make a difference in brain health in our 70s and 80s.

"Exercise is an inexpensive way to improve health and our study shows it may have a protective effect on the brain," says Dr. Aron S. Buchman with Rush University Medical Center in Chicago, who led the study.

Previous research found just 45 minutes of walking three days a week actually increased brain volume among individuals 65 and older.

The new study, published Wednesday in the online issue of Neurology, is unique because Buchman was able to analyze the actual brains of study participants. The findings are a "great thank you" to the participants who agreed to donate their brains for research after death, he says.

https://www.npr.org/sections/health-shots/2019/01/16/684589375/daily-movement-even-household-chores-may-boost-brain-health-in-elderly

Terrible situation. Grandmother had it so my mom has been paranoid about it. Encourage your parents to be active.

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8 hours ago, happyfunball said:

https://www.npr.org/sections/health-shots/2019/01/16/684589375/daily-movement-even-household-chores-may-boost-brain-health-in-elderly

Terrible situation. Grandmother had it so my mom has been paranoid about it. Encourage your parents to be active.

I can't stress this enough.  There is a direct link between mind and body.  Being active won't sure this but it will prolong the demise and give you some more good years.

Also, on this subject, make them do things even if it's uncomfortable and time consumer.  Force them to think and use their minds and bodies.  The easy answer is to help them and do things for them but the correct choice is to push them and force them.  If they sit in their easy chair and watch shit TV, this will go downhill fast.

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  • 1 year later...

bump.

 

My MIL is suffering from Alzheimer's and her husband is not much of a help.  I feel like I really need to support my wife and her mother the best I can.  I'm hoping that some of you Shagsters canhelp shorten the learning curve for me here a bit or point me to a website or an organization that they have vetted.

I am starting from square 1 here.  Bottom line, she is starting to forget things and is deteriorating at a rapid pace.  We worry about her now for all of her daily activities.  She started confusing family members names the other day and it was a final straw for me.  I asked her husband to get long term care insurance for them years ago but he never acted on my advice.  I think we need to get her in home care.  From there, I know she may need an assisted living arrangement, and so on......

This ride is really going to suck!

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We have my mom (who has alzheimers) in an assisted living center. Thankfully she did take out a long term care policy 10 years ago after my dad passed and eventually, after much back and forth, those cheap bastards at Mutual of Omaha are now paying out. The place that we have her also has a memory care wing, which originally we planned on moving her to when assisted living was no longer possible, but we recently decided to move her to a facility closer to my sister.  We had it down to a couple of places and the 'Rona hit, so no moving her to any new facility for now. 

Oh, and now there are a shitload of Covid cases on the memory care wing at her current place, but none so far on the assisted living side. We assume thats just a matter of time however, so we are now seriously considering moving her into an apartment close to my sister with full time aides, but we can't be sure that is much safer. As more and more people start interacting around the country it seems hard to guarantee that at home aides would be able to avoid catching the Rona any more than her current place. Entire thing is a clusterfuck. 

 

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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. 

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Fuck Alzheimers.

Lost my dear MIL last year on July 3rd.  The day they die is like liberation of their soul and an end to their torment.  I posted and shared my feelings at that time last year.

 

I miss her all the time but am so fucking glad she is free of that despicable torture.  It is truly heartbreaking to see.

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