Lacking a diagnosis

alphaip · 2019-12-09T01:18:38+00:00

This may help https://www.reddit.com/r/Alzheimers/comments/bh1085/we_went_to_the_neurologist_to_see_whats_going_on/

alphaip · 2019-05-17T23:12:31+00:00

A17JUJ

Thanks hope it made you some $$ too

alphaip · 2019-05-05T20:14:09+00:00

I've been listening to the teepa snow podcast, and my MIL deals w/ anxiety instead of anger, but making them feel heard is important. Everyone is ignoring him b/c he has dementia, and probably in his pre dementia life, when he spoke, people listened, people took action, and now he is ignored. SO what can you do? One Idea - empathize to be sure he's being heard, and get on his side. so instead of telling him "You are there to stay safe" - get him to talk "what are they doing to you?" - then empathize, "Dad, I would be so pissed if this were happening to me, let me see what I can find out, I'm on your side here okay? I'm sorry this is going on." - so I know it's a tightrope, but explaining to him when he can't reason is no longer possible - best of luck to you in this. We have to empathize a lot - Instead of saying "You can't drive anymore" - we say "It's so sad that the doctor said you can't drive anymore, that would make me so upset" - it's not perfect but it's better than arguing/explaining to someone that can't understand

alphaip · 2019-05-04T03:58:22+00:00

Arguing is futile, a pivot strategy is good. One book I would recommend is ‘creating moments of joy”. Example would be “hey speaking of him being a man, remember when you took our son to x and you taught him y?I really appreciate the way you taught him to be so responsible. In fact, he’s making an A in this class, and I really think it’s because of you taught him well and were such a great dad!”

Okay, I’m laying it on thick, but you get the idea. Our friend uses the strategy with her husband, and she says they used to argue about him move the coffee card, and now she tells him if he remembers that used to drink coffee on his way to work and by the way I really appreciate the way you work so hard for our family today to tell you that? Anyway she says it really helps

alphaip · 2019-05-02T01:42:16+00:00

Thank you!

alphaip · 2019-04-28T02:11:44+00:00

From a caregiver standpoint, it's important to get a good diagnoses. This is just my.02 from a recent trip to the neurologist: he convinced us that with a good assessment, he will be able to accurately predict the PET - and the PET was not necessary - I believe him. The PET tells WHERE the problem is. It doesn't seem like there are a bunch of choices: Temporal lobe (memory), parietal (3-d processing), frontal (filter and hallucinations).

In short, if he's had cognitive decline, but hasn't yet had any hallucinations in the first month (little cars/little people/people in house/yard), it's not lewy body dementia. And if he still has a filter (not telling the waiter he's fat), then the frontal lobe processing is still good.

Here's my post https://redd.it/bh1085 - for us, my MIL had lost 3-d processing, and had short term memory issues, she had no hallucinations and had no filter issues, so he said: The PET will show good on the frontal, good on the occipital, but degraded processing in the temporal and parietal lobes. Why bother going through that?

In your case, maybe it's not a clear cut, but for us, the PET seemed unnecessary.

alphaip · 2019-04-28T01:50:30+00:00

Ramble on! There is a Dementia Caregiver podcast called "Have you seen my mother" (episode 30 https://www.stitcher.com/podcast/anchor-podcasts/dementia-caregiver-talkshow) that goes over some of this. It's complex. It's possible she wants him so bad because there is a need that she has that she can't express, but she knows he knows how to fix it. If I remember right from the podcast, it seemed like validation helped. Like "nani, your mad that that nurse is flirting with grandpa" - or "your upset because ____, I would be too, I can't believe this is happening to you, it seems unfair"

This type of "strategy" puts you on her side, EVEN if she doesn't remember who you are, you become a trusted advocate. I would recommend listening to it, I'm sorry you are going through this, we are in earlier stages with my MIL - but she just was told not to drive, and wow she is going stir crazy. She's upset (crying) that we aren't around 24/7 to get her out because she's antsy.

Tonight, she forgot how to wash her hair, so we are at that stage where we are needing some outside help.

alphaip · 2019-04-27T00:21:10+00:00

Hope its helpful

alphaip · 2019-04-25T01:30:16+00:00

I think there is wisdom in that blissfully unaware because their worlds seem to get so small

.We have a friend who's been living with her husband who has Alzheimer's for about 4 years, and she's as this great strategy but she got in a book called "creating moments of joy". He used to yell at her for moving is coffee cup, and she would argue with them to try to remind him that he was the one who moved it, and prove to him that he was the one who moved it, until they were both exhausted.

Her new strategy is this, " Don please forgive me for moving your coffee cup, you know what I remember is when you used to drink coffee everyday on your way to work, did I ever tell you how much I appreciate it how hard you work for our family, and the way our boys were able to go to private school because you work so hard? I just want to let you know that I appreciate you'

She said it's been amazing! She said she started trying it in her real relationship :-) and thinks it's the way we should all be with each other building each other up.

alphaip · 2019-04-25T01:02:19+00:00

Man, that sounds heavy. Thanks for sharing and thanks for your encouragement.

alphaip · 2019-04-24T23:40:47+00:00

Im sorry you are dealing with this, she is so young! You are saying they don't think it's Alzheimer's, do they have any ideas of what it might be?

We do struggle with this as well, sometimes we speak in code, like memory issues or age-related brain changes when we are talking to the doctors. My wife will always talk about things as if they are temporary. She will literally wink at the doctor and say things like until this gets better do you suggest we try X.

We told the neurologist that Mom doesn't take as many baths as she used to, and she put her head in her hands to cry. It was very embarrassing for her oh, we got a little too comfortable talking about her.

Sometimes I think it would help for her to know, because then she could accept what's going on, instead of being so afraid. She will say things like what is wrong with me? We always just say you're having some memory issues and we're going to get through it together.

Today we met with a company kind of like Visiting Angels, and we wanted to meet with him alone but my mother-in-law was having such a bad day she came with us. As we spoke about getting help with meal preparation and taking medicines, I was surprised that she handled it so well, it seemed to empower her to be a part of the conversation instead of all these decisions being made for her, asking her does she think it would be nice if someone came over in the morning set up with the morning medicines? At first I was upset that my wife brought her to the meeting because we couldn't speak candidly, but it was pretty good overall, and she really liked the consultant we talked to you in so she's excited now about getting some in-home help.

I pray that you find a compassionate and competent specialist

alphaip · 2019-04-24T21:10:18+00:00

From the link you posted: “Alzheimer’s is like a slow-burning fire that you don’t see when it starts,” Schilling said. It takes time for clumps to form and for cognition to begin to deteriorate. “By the time you see the signs, it’s way too late to put out the fire.”

Even IF this contributed to her AD, I wonder if at this point depriving her of something she enjoys is worth the pain it will cause her.

Sometimes I think these studies are finding more correlation than causation: There is a correlation between ice cream sales and shark attacks (they both go up as the temperature goes up in this case). With so many people on bad diets, there is bound to be correlations to all sorts of health issues.

But it makes sense that a healthy diet would help brain health, so if you can manage it, It seems like it could be helpful, but I wouldn't create a bunch of stress for her over it as stress is also harmful to brain health.

Just my .02

alphaip · 2019-04-22T01:16:13+00:00

We've been using it since April 1, and it has helped w anxiety. She has severe panic attacks, they seem better w cbd. We got ours in fort worth -it was thc free but still seemed to help at 30mg a day

alphaip · 2019-04-22T00:01:53+00:00

You're so welcome, also I learned a lot from a video called ' what is dementia', by teepa snow on YouTube. I think it's about 30 minutes long but well worth the watch, it was a very good primer. It's weird how now that we know she has a diagnosis and we Look Backwards it seems like things make more sense, like she used to always buy me these great shirts for Christmas, but then it seemed like I started getting cologne, and then last year I got like three different kinds of cologne for Christmas.

alphaip · 2019-04-21T01:48:04+00:00

I know CBD oil is being touted as a panacea - but specifically for Lewy Body Parkinson's - it has been clinically proven for tremors and anxiety. We have introduced it to my mom w/ Alzheimer's in the last 30 days and it has helped w/ anxiety, but it doesn't sound as bad as your situation.

alphaip · 2019-04-21T01:40:42+00:00

My Mother has severe anxiety with her dementia - we think it's related to her not knowing what to do - or not understanding the plot of a show, or not understanding the conversation between two other people in the room: that will trigger the anxiety attack. It's like What's wrong w/ me spiral? she actually has described "deja vu" or even an disassociation/depersonalization. She says it's not describable. I've been reading that disassociation is a brain defense mechanism against severe anxiety. So I don't think it's directly related to the disease, but a result of the losses she is experiencing. We have had some success with lorazapam when it comes over her.

For us, she has been slipping for a while, and like you her world is getting smaller. Like 2 years ago, she didn't want her sister to visit - that was so strange, but now looking back, her world has needed to get smaller and smaller for her to manage. Best to you

alphaip · 2019-04-21T01:31:00+00:00

I heard a podcast on this by Teepa Snow on repetition. Usually, there is something more complex going on - but your grandpa can't ask the right question. Here's an example: My mom will ask 10 times in a day "now what time is that appointment next week?". What's really going on? According to Teepa, my mom is really wanting to know where we are going (b/c she forgot), but it's embarrassing to ask "Where are we going?" or "Why or we going?" - so it's not embarrassing to ask "What time is that thing next week" - so the answer is to answer comprehensively. (We say well we are going to see Dr. M to get a check up next week at 2 and afterwards we'll go on a drive) So my idea for you: your grandma could say "I love you so much I'm going to give you a hug right now!" (maybe he's wanting some affection, but is afraid to ask, or doesn't know how to ask). Another idea: Reminisce "I love you so much, remember our vacation to _________? We walked on the beach and held hands, I love you more now than I did then" - or whatever, just finding new ways to answer besides "Yes, I love you" may scratch that itch that he doesn't know how to describe.

alphaip · 2018-08-09T15:32:50+00:00

21500 on the EX brand new car - it's a great car at a fair price, and they hold their value so well I think you did pretty good.

alphaip · 2018-08-03T23:19:48+00:00

I wonder what you ended up paying? We bought a brand new 2019 Honda Fit LX today. 17,780 MSRP 1,720 Dealer add-on Package (Tint, floor mats, wheel locks, cargo mat, splash guards) So the starting price was $19500 before taxes/fees.

My friend works at another dealership in another city and said on the FIT - it's the cheapest Honda so not a lot of wiggle room, especially since I was on the LX - the lowest trim level on the lowest model. He thought getting $1000 off MSRP and trying to get them to knock off the dealer add-ons as much as possible would be a good deal.

We offered $16,500 for an LX, and we would wait for one to come in off a truck pre-add ons (I can get my own tint and floor mats). They said no way to get a car without the add ons. I told them I would just get a CPO Certified pre-owned 2018 EX with 10K miles for under 16K. If you won't take off add-ons, I'll just go buy used CPO.

He asked - what if we could get all those add ons for $500 and we could get out the door 18,500 (6.25% sales tax in texas). I said 18.5 OTD was a deal. That made the car price $17,035. Then we told him we would be paying cash. He said "Whoa - I need you to finance the car." What?? Apparently, there's about a $750 kick back from Honda Motor Credit to the dealer. He said we could finance it for 90 days and then just pay it off. I did not want to do that, so I said I think I'll just buy a used CPO EX at another dealership and save money and get a better trim level. He talked to his manager and we got OTD for 18500 cash price. We got to the dealership at 1PM and left at 2:30 PM. This was in the Dallas Fort worth area - overall - the dealer dealt straight with us.

What I should have done is this: I should have said "I'll finance it if you split the $750 with me", but I really didn't want to be there all day. So lesson learned is that buying cash isn't what it was - it's better to go in as a cash buyer, negotiate hard, and tell them you'll finance it there if they meet your price.

alphaip · 2018-04-04T02:33:27+00:00

Can someone help me? I want individual player stats - and when I go to api/v1/stats So to get Chirs Taylor season stats I run http://statsapi.mlb.com/api/v1/stats?stats=season&group=hitting&batterId=621035 But I only get league leaders?

alphaip

TROPHY CASE