Ongoing (?) Alzheimer's Support Thread

Miscellaneous and Personal Stuff I Must Share
1

I’m starting this thread with hopes to create a gathering place for support for all those whose lives have been touched by Alzheimer’s Disease or dementia. I know I’m not the only Doper dealing with this on a daily basis and I was thinking that maybe we could all use some support, commiseration, and a laugh now and then.

I am the primary caretaker for my two favorite people in the world, my grandparents. It was a complete surprise when both of my grandparents were diagnosed with Alz. We might have expected it of my grandmother because she took care of her mother who also had it, but not my grandpa, too. We have good days and bad days and lately the bad has been outweighing the good.

So, anybody who would care to share their joy or sadness, successes or failures, please join in. Tell us about yourself and most importantly, (and this is my favorite part of The Straight Dope) know that you’re part of a community filled with some amazingly compassionate and caring people and that you’re never alone on this journey.

2

My father is 83, and his mind has been slowly crumbling for some time. He no longer reads, he won’t watch any movie he hasn’t seen multiple times. The only tv shows he’ll watch are Fox pundits yelling about things. I have to police his medication (and put up with him getting all crotchety because I’m “bossing him around”), humor his paranoia, and check up on tasks that he considers his by virtue of him being Man and Dad. So, while he still thinks he’s in charge of locking up the house and getting the mail, what he doesn’t know is that in this and many other things, I quietly come by fifteen minutes later and catch what he’s missed.

He had a memory test a few months ago. He scored a 32% - right at the borderline of dementia/Alzheimer’s onset. He nodded and smiled as the doctor explained what this meant, and as soon as we were out to the car, he started complaining that those tests weren’t designed right. They wanted him to remember unrelated objects and things he’d never seen before. I explained that was the point, and that the score was not what percentage he’d gotten right, but how he compared to a norm reference. That is, he scored as well or better than not quite a third of the people who’d originally taken it.

The doctor told him specifically that to avoid more memory and cognitive loss, he needs to start socializing more, doing crossword puzzles, and sudoku. Dad refuses to even consider it. He’s up for a driver’s test in the next couple of months, and Mom and I are hoping/praying that he outright flunks it, but in order to ensure that he no longer drives, we need to disable and/or get rid of the car he drives. We are really not looking forward to that emotional slaughter.

He drinks too much - sometimes as much as a bottle of wine a day, and it gets worse when he’s upset. But he won’t take the anti-anxiety medications his doctor prescribes. Nothing I say can be accepted at face value, because I am not just female, I’m his daughter. He treats waitresses and grocery clerks with more courtesy than he does me.

Some days, I hate him, because it’s like watching something slowly kill the man my father was. Many days, I’m angry, but I manage to let it go. Every single damn day, I grieve for the bitter, lonely, angry shell my father has become.

And I know, it’s not going to get better until he dies. That’s what really breaks my heart. God help me, if I start to lose my mind the way he has, if I think I might become as constantly angry and confused as he is, I will kill myself first. He is in Hell, and for some reason, he thinks death would be worse.

3

My grandparents moved in with me and my parents when I was 3 and my grandma took care of me all the time after that. One of my biggest fears is that the only memories that I’m going to have of her are of this person that she is now.

Yeah. I feel exactly the same way, but this is one thing that I definitely try not to think about or else I just end up getting overwhelmed and want to hide under the covers all day and that doesn’t do anyone any good.

4

A woman who used to be my boss had both her parents taken by Alzheimer’s. She told me once that the thing she kept reminding herself as she cared for her mother was that she (her mother) didn’t choose to be this way. She said it helped her not be angry and it helped her remember who her mother really was before she got sick.

5

There will come a time when you can’t take care of them by yourself any longer. Don’t feel bad, don’t guilt yourself. It just is what it is.

Sadly.

6

I took care of my (ex) FIL who had early-onset Alzheimers diagnosed at 54, died at 62).

He was an asshole in his younger years. Beat the wife, beat the kids, etc. By the time I met him, he had turned into a nice guy. Go figure?

Anyway, the thing I quickly discovered (that his family couldn’t/wouldn’t see, based on past behavior)…if I laughed at something he did…he laughed too. He totally followed cues from other emotions and applied them to hmself. Didn’t matter that it was him making me laugh, just the laughter was enough. He was totally clued into other peoples cues. If anyone was was sad, he was. Angry, Yep. Happy (or appeared to be), he was laughing and happy.

That was a serious revelation that made him a thousand times easier to deal with. When he got angry and paranoid, we would start inventing things to laugh about. The TV, the dog, each other…whatever it took. It was amazing how it worked.

I think it made him feel part of the group, instead of totally outside.

Anyway, I am not saying it will work for all, just a protip to try. It made life easier for six or seven of us until he died. Kind of a “distract, don’t engage” tactic, but it worked.

The other thing my sister told BIL a few weeks ago when he put his Mom in an Alzheimer’s Unit… “Did you expect our son to understand when you told him Daddy was going out of town on business when he was three? Then don’t expect it of your Mom.”

He said that helped him put things in perspective.

Just experience from one who’s been there. YMMV…IANAD, ect. Although I am, at this point, a professional caregiver (got the certificates and everything), and have been told I have a “knack” for it, but every one is different.

This is damned tough and I wish you all well.

Be sure you take time for yourselves and don’t end up driving, while crying, up and down a 40 miles stretch of interstate All Night Long. That isn’t a good outcome. Although it did alert his immediate family that I wasn’t dealing well with it while his family was totally avoiding the issue. :rolleyes:

7

So, my mom got dementia first. Hers was not Alzheimer’s. She had a series of small strokes and ended up with enough damage to her brain that she lost all short term memory. And then started losing long term memory. My dad’s health was going steadily downhill, and one day I got a call from their visiting nurse (he should have been hospitalized, but they lived in a small town and the doctor understood that there was no one to watch Mom, so a visiting nurse went by every day) who wanted to know when I would be there next. I was, by this time, driving 3 hours to see them every weekend. So I said that I would be there on Saturday, and the nurse asked me, “What time?” I got off the phone and told my husband, “We are in big trouble.” When I came home after that weekend (which turned into a week) I brought my parents and moved them into an assisted living facility.

One thing I did with Mom which was helpful was to print out little cards and laminate them. Then I put them into all of her pockets. These cards answered some of the questions she asked over and over, so it included stuff like where she lived, and that she was not able to drive anymore. I put in something about her short term memory being a problem but that people understood and helped her. I had to add “All of this is true” because she asked that question all the time.

My dad was becoming disoriented but did not completely fall into dementia until my mom died. The stories I could tell (and probably will)!!!

And then last year we moved my MIL to our city, too, after she was diagnosed with Alzheimer’s. She is slipping down more and more. She insists that she has a brain tumor because she has such a hard time remembering anything.

Just to add to the mix, we have a dog with dementia, too. Because it never rains but it pours.

I think this thread will be very helpful to lots of people. There is something about sharing and listening to other people with the same stories… You know that you are not the only one trying to cope.

8

Two things:

I find myself blaming my father, because many of his decisions have led to his current health issues. His dementia is almost certainly vascular. His brain just doesn’t get enough blood, and the neurons and glial cells are dying off. He smoked for forty years. He has always had a problem with alcohol (though he hid it so well while I was growing up that I didn’t know about it until the last few years). He doesn’t socialize. He has no outside contacts, just family and a very small handful of friends from his childhood and Navy years. When he retired, he got a degree in psychology, and that was it - he decided he didn’t ever need to learn anything else.

It makes me really look at how I’m currently living my life. No, I don’t smoke. No, I don’t drink (two beers a month?). But I am overweight, I don’t exercise enough, I’ve had multiple bouts of depression, and my social circle has shrunk. I’m pretty much guaranteed to develop Type II diabetes in the next five years if I don’t lose a substantial amount of weight. I do try to learn as much as I can - usually through reading. I don’t kid myself about the consequences of my behavior. I need to start going to a UU congregation again, if only for the social outlet.

Thing Two:

My mom relates that when she was getting her BSN, during a neurology lecture, one of the students asked “why is it, when people age, all the negative personality traits come out, and not the positive ones?”. The teacher, a well respected neurologist, explained that as most people age, their brains shrink, they lose neurons, and they lose functions of the brain, beginning at the top level. Peel back the frontal cortex, and you lose civilization. Temporal lobes, the ability to socialize. And so on. When you finally get down to the brain stem - the reptile brain - you’ve got a crocodile staring right back at you. All those negative behaviors are the sum total of the simplest drive to survive - a drive that is moderated and directed by the more evolved parts of the brain. Once the higher levels are gone, what you’re left with is very unpleasant.

9

Hi, just to let people know I was a nurse who worked with dementia patients for many years, including 5 years in a specialty dementia floor in a psychiatric hospital. So if anyone has specific questions I can try to help you answer them. I also have a thread on here “ask the dementia nurse” or some such.

I lost two Grandparents to dementia. My mom’s dad and my dad’s mom. Grandpa became suspicious and mean. He started hating everyone, Americans, Germans, Natives, etc… this was not who he had been. He got out of the house one morning and walked across town ending up where his Grandparents had lived. He was wearing pajamas and winter boots. (It was August)He crossed a highway and some pretty busy roads to get there) He was found with socks and pajamas in a coffee can, a steno pad with all my family’s phone numbers on it. and a bag of licorice all-sorts. When he finally got home with police assistance, and all the tumult wore off he baracaded the door to “keep the sneaky coppers out”. He had a heart attack the next day and died in his sleep.

My Grandma never got bad or violent, just more and more forgetful and confused. Her loss of the social filter was fun, I found out at least a version of family history that otherwise would have been lost to the ages. (she picked up her second husband by faking a fainting spell!) It was hard on all of us to watch her lose a bit every day but I took a lot of comfort that she retained her dignity and her sense of style until the end. (I can’t go to the dining room without lipstick!.. She couldn’t remember my son’s name, or that her sisters were dead, but lipstick is for the ages.)

So… tons of empathy, and if anyone has any questions for me I would be happy to try to help.

10

Thank you!

I’ve only got a few minutes online this morning so I thought I’d add something that sorta makes me laugh. Both of my grandparents are losing their filter. The other day we went out to lunch and they started whispering to each other to look at some man. I just told them I didn’t want to know what they were talking about because they were fairly obvious already and I didn’t want to make it worse. The funny thing, though, is that sometimes we’ll go out to eat and what they’ll be pointing out to each other is a fat person that they’ve seen. While that in and of itself isn’t funny, 9 times out of 10 the ‘fat’ person weighs less than me!

11

I keep trying to post to this thread but am having trouble getting the words together.

My husband and I moved to NY to live with his parents and take care of them. During that time husband was diagnosed with musician’s focal dystonia so in addition to caring for his parents he’s trying to get his right hand function back.

His dad passed away in May of this year and now it’s just us and his mom. She just turned 90 and is showing all the signs of alzheimer’s or dementia.

It’s very surreal at times and I often wonder how things are going to progress and what our lives will be like in years to come. I fully expect his mom to live for another 10 or more years. She’s physically healthy and her mother lived to be 102.

I could really go on and on but it’s been an interesting journey. I’ve watched my husband handle challenge after challenge and he has always managed it. Sure, good days and bad days but I have a renewed respect and admiration for him and all that he’s going through.

Mostly we remember to laugh. We try not to sweat the small stuff and try not to let the crazy little habits get under our skin.

I do have one question though. My mother in law is not diagnosed with anything. We did take her to a neurologist a year ago and he said she had Mild Cognitive Impairment which might or might not progress into a more serious dementia. Is there any point in seeking further diagnosis? She has most certainly gotten worse since that visit. I can see she’s not tracking like she used to. She has all of the signs of alzheimer’s/dementia but as there’s no cure and no medicine what’s the point of slapping a label on it? Am I missing something?

She gets regular check ups (3x/year) from her family physician, dentist 2x a year, eye doctor…all that stuff. She’s healthy except for high blood pressure that is controlled with medication and high cholesterol which isn’t being treated because she can’t tolerate the drugs. But she’s had high cholesterol for like 40 years and her heart is fine (she sees the cardiologist every year too).

Sorry, that went on a lot longer than I intended. Just wondering if there’s any point in pursuing an Alzheimer’s or Dementia diagnosis.

12

Funny bit…

When I had taken my grandma at her doctor appointment, where the doctor asked her the questions that she was supposed to answer to the best of her ability, to see if dementia/AD was setting in, the first question was, “Who is the President of the United States?”
My grandma couldn’t think of Bush, but, given that she was a staunch Democrat all her life, all she could come up with for an answer was, “Oooo! That bastard!”

Ah, memories. :smiley:

13

My grandmother is now in a nursing home, though is was a race to see whether mobility or cognitive issues would put her there first. A series of small strokes has impaired her over the course of several years, and her social filters have gone away entirely. Oddly, she’s far more pleasant now than ever before - thank God, because she’s been a raging bitch since anyone can remember!

One funny thing: for months, Grandmother raged at anyone who raised the rails on her bed. No how, no way did she want those up. But in her imagination, Baby Lily (my youngest daughter) sleeps with Grandmother every night. Even though her short-term memory is shot, Grandmother keeps track of Lily’s development somehow, and now insists that the rails be raised so that Baby can’t climb out of the bed. Weirdly endearing coming from someone who never really liked kids…

I was a small child when my paternal grandfather started showing signs of the Alzheimers that killed him a decade later, and I sometimes think that his illness moved me to most favored grandchild status. I remember being a little kid (3 or 4,) and spending large chunks of time at my grandparents’ house - two to four weeks. While I visited, Grandpa and I would go to town every day, and I’d sometimes have to remind him how to get home (two right turns and the house was on the left.) I was old and observant enough to navigate, but young enough that it didn’t seem odd that Grandpa couldn’t. And I guess I offered him his last bit of independence. Poignant memory, now that I’m old enough to understand what was going on, but I’ll always treasure the time I spent with him. (And as a middle child, it was nice for me to always be the center of someone’s attention!)

My great-grandmother suffered a massive stroke at age 88, which left her very childlike. The family tried hard to care for her at home, but it was just too much (Granny broke her hip simultaneous to the stroke, so she had mobility issues also.) When she went into the nursing home, she was as happy as she could be: she had one of those big old-fashioned wheelchairs, which she referred to as “my little car,” and it got “real good mileage,” because she’d send it home with Granddaddy for regular service. (Granddaddy had previously owned a service station.) Granny had lived a long and very independent life, raising five daughters as a widow, sending them all to school far past her own Second Primer education, farming, voting in every election after the 21st Amendment was passed, etc.; but she’d never learned to drive, so she relished that “car” of hers!

So far, I haven’t been a primary caregiver for a dementia patient, but I’ve learned to find whatever humor that exists in the situation. Otherwise, it’s too sad and too grim…

14

One of the hardest parts about dealing with Dad - even though he barely qualifies for dementia (but it’s coming, oh, it’s coming) - is how touchy he is about anything that might impinge on his ego. Tell him Realtors make a 6% commission on sales instead of 10%? You’re basically telling him he’s not a man, not a father, and not the boss of anything. He can spout off on any topic he likes and say the most outrageous things, but God forbid you hold an opinion contrary to his.

He loses things, forgets things, and accidentally breaks things, but it’s always someone else’s fault. Someone moved it or stole it, someone did something to it - and because I’m the person who’s usually around (and female, and younger, and his daughter), I get blamed for a lot of it. I once overheard him say that he thought I’d stolen money from him. Mom tore strips out of him for that, and he was so sorry. He felt so bad, it was pitiful.

If he were angry all the time, I could dismiss it. If he honestly believed I would steal from him (when I have access to both bank accounts, the ATM card, the credit card, and all his possessions), I could write it up to paranoia. But when he is cornered and can’t stay in denial, and he actually grasps the emotional consequences of what he says and does . . . it just destroys him. I end up spending more time assuring him that it’s okay, I’m okay, I love him.

And then, the next day, he’s back to blaming me for the tv not working or not being able to find the new checkbook.

sigh

15

There are medications which can slow down the progress of dementia, so there is that if you want to pursue it. My father is on one and I do think it helps.

Also, if in the future you find yourself needing to get a court order to become her guardian, she’ll need an official diagnosis and sworn statement that she can no longer make her own decisions in order to get the order. My parents, who both have dementia, have stubbornly refused to move out of their house. They are getting bad enough that I think it may have to happen this year. If someone doesn’t fall and break a hip first (which would, I think, serve as a turning point on its own), I will have to appeal to the county to start the guardianship process. The first thing they’ll want is a doctor’s statement.

16

This. I saw this with my grandmother, and I see it now with my mother. And I swear, I will kill myself at the first signs of it in myself. The cruelty of Alzheimer’s is that it kills the person before the body is dead.

My mother still has mornings when she remembers who she used to be. And sometimes those mornings are the worst, because she knows what is happening to her, and she is no longer physically capable of suiciding, which she swore that she would do if she started sliding into dementia. It’s like my real mother is hibernating inside her body, and she only wakes up briefly on occasion. The rest of the time, there’s a zombie operating her body. When my mother is awake, and remembers, she’s angry at what’s happening. And when the zombie has eaten her brain, she’s angry because she doesn’t understand what’s happening.

She and my father are in a nursing home now, because my father was no longer capable of looking after her.

17

If I hadn’t seen medications, particularly the expensive but usually worth it Ebixa work I would say no point in pursuing a diagnosis. But to be on medications, get power of attorney settled, etc a diagnosis is useful.

I am socked in right now with ear infection/sinus infection/ something else… if I don’t check in on this thread for a few days hang tight, I will be back.

18

I postedthis last week in the MMP about their final time driving on their own when they got lost and finally made it home hours later. My dad, of course, took away their keys.

They have no recollection of this and spent 1 1/2 hours tonight looking for their car keys. Incidentally, I didn’t realize that’s what they were doing or I would have stopped them sooner. I told my grandpa where the keys were but he either forgot or didn’t hear me. I’m going to write them a note tomorrow.

I did want to mention that my dad is still in the picture but he does not live here with us. Long story. This sometimes presents a challenge, though, as they will not always accept my authority and we occasionally have to call him.

19

My own psychiatrist said that the new dementia meds wouldn’t do Dad any good, because his dementia is related to his vascular problems - vascular stenosis (hardening and blocking of the tiny blood arteries), high blood pressure, and occasional clots.

He was so lonely yesterday, he came up to my bedroom and sat on my bed as I was working on my computer. It took me a few minutes to clue in, but I finally thought to ask him if he wanted to go out to dinner. Which he did. Dinner itself was nice, but the drive there? Hoo boy.

Yeah, I said in a previous post that my worry was he’d get lost and panic. Not anymore. The man’s a hazard behind the steering wheel. I need to talk to my mom about getting that form in so the state can yank his driver’s license. I wish - oh, how I wish - there was even a snowball’s chance in hell that he would listen to me say “Dad, your reaction times are off, you can’t figure out what the other drivers are doing, and you came to a complete stop in the middle of a lane, with a green light fifty yards ahead, so you could change a lane. It’s time to stop driving.” Not going to happen, though.

20

Hell, even if he DIDN’T have dementia, it’s very hard to get some people to listen to you when you tell them that they don’t have the reactions or the eyesight to drive safely. I thought we were going to have to stage an intervention on my father, who is still pretty bright, but his reaction times can be measured in minutes, not seconds. And sometimes in hours.

Did I say “some people”? Let’s make that most people.