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Topic: OT: Dementia/Alzheimers

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bayareabadger

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Re: OT: Dementia/Alzheimers
« Reply #28 on: October 22, 2020, 04:37:28 PM »


I'd say that in most cases it's probably better to have someone pass from a disease where you have some warning than to pass suddenly, but I think Alzheimer's is the exception. Because you can't really effectively say goodbye to someone who no longer inhabits the body that's breathing before you.

I think it's to a degree case by case. If someone if in pain for a year, unable to do anything, that's one thing. If they can make it to a big life moment or travel, it's different. If it's sudden, it might be better for the person, worse for those around them. 

In any case, it's almost always brutal all the way around. 

ELA

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Re: OT: Dementia/Alzheimers
« Reply #29 on: October 22, 2020, 04:48:49 PM »
I feel for everyone who has watched a parent or loved one go through this.  Truly heartbreaking

medinabuckeye1

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Re: OT: Dementia/Alzheimers
« Reply #30 on: October 22, 2020, 11:00:35 PM »
Of the 5 siblings my one brother from out of town thought she was just fine and even was in denial when she had a minor fender bender.A blessing in disguise as then we told mom the courts took her License but she had a shuttle where we moved her,so she got out just fine and made friends fast.Unfortunately she fell and broke her hip and that was a game changer then the condition declined by leaps/bounds.Had to prove to the one brother that she hit someone.Came close to dis owning him as he was in denial,fortunately no one argued over the estate much of it absorbed by health care
That is part of the problem with my mom vis-a-vis Dad's care.  She is right there, closer than any of us but for a long time she was just in denial.  There is no other way to describe it.  Dad didn't know where he was and she was still trying to get him to do chores and wondering why he couldn't get them done. 

It is very hard to accept that this man who taught me so many things now literally can't operate a coat hanger.  It is also weird having a year-and-a-half year old son who is literally learning the things that dad is forgetting.  Dealing with the two of them has gotten eerily similar as my son grows and learns and my dad declines and forgets. 

More advice:
In the beginning you are going to get frustrated with them.  Try not to take it out on them but sometimes (especially early on) you'll forget that they have an incurable disease and get mad that they screwed up whatever it was.  Don't beat yourself up too much for that, just learn from it and move on. 

I remember early on my dad was installing a screen door.  As home repairs go, this is reasonably easy.  Dad taught me how many years ago and I've probably installed dozens of them over the years.  Anyway, he called me and asked me to help.  I stopped by thinking I would only be there a few minutes because the only part of that job that is really a two-man job is the actual installation after the door is ready to hang because you need one guy to hold the door in place while the other guy screws it to the door frame. 

PRO TIP:
Screen doors ship set up to be either right-handed or left-handed and with the hardware needing to be attached.  Typically you set up the door and attach the latch/closer/etc with the door on saw-horses in the front yard, then hang the door when you are all done.  Your natural inclination will probably be to hold the door at the frame, then turn around and lay the door on the saw-horses to get it ready.  DO NOT do it that way.  When you do it that way the door is backwards from the opening so as you get it ready to install you have to keep mentally flipping the image of the door.  Instead, set the door up in the front yard with the top of the door toward the house.  That way the door is exactly as it will be when finally installed.  You can see where everything goes much more easily because it is all straight forward and right in front of you instead of backwards and behind you. 

Anyway, back to my story.  I arrived and my dad (who taught me how to install screen doors) had screwed this door up six ways to Sunday.  He had the closer mounted to the outside of the door, the inside latch was backwards, the outside latch was upside down, etc.  I had to undo everything he had done, then redo it the right way.  At the time I was frustrated (mostly because I had a date with my (now) wife that evening).  I razzed dad about the screw up like we always razzed each other about things like that when he was younger but this was different.  He hadn't just messed it up because he was in a hurry, he couldn't figure it out. 
« Last Edit: October 22, 2020, 11:11:11 PM by medinabuckeye1 »

medinabuckeye1

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Re: OT: Dementia/Alzheimers
« Reply #31 on: October 22, 2020, 11:08:40 PM »
I consider myself lucky that I haven't been that close to it personally. I had a grandmother losing it at the end, to the point that the last time I saw her (my other grandma's funeral) she repeated the same story to me three times. But she knew who I was, at least.

My wife's best friend lost her mom to early onset Alzheimer's. That was obviously rough for all involved. My wife has such great stories about her, but by the time I met my wife she was already so far gone that that woman no longer existed. She was the one that taught my wife how to make meatloaf, "how much do I put in? Until it looks right!", and my wife paid it forward teaching my son Rachel's meatloaf "recipe". She eventually I think had a fall and ended up with a brain bleed, and she was just so far gone that surgery [even if it kept her alive] wouldn't really improve her life, so they had to put her on hospice and just let her go.

I'd say that in most cases it's probably better to have someone pass from a disease where you have some warning than to pass suddenly, but I think Alzheimer's is the exception. Because you can't really effectively say goodbye to someone who no longer inhabits the body that's breathing before you.

Medina, my thoughts are with you, brother. Good luck, and sorry you [or anyone] ever has to deal with this.
That must have been horrible for your wife's best friend.  My dad is 80 and this is bad enough but to see it with someone younger who would otherwise have plenty of life left would be even worse.  

The part of your comment that I bolded is oh-so-true.  Not only can you not effectively say goodbye to someone who no longer inhabits the body that's breathing before you, but it also doesn't even seem appropriate to the extent that you can.  In a way my dad is long gone but physically he is still, to paraphrase you, inhabiting the body that's breathing before me.  This disease also varies greatly from person to person.  Many alzheimer's patients die of some other ailment perhaps only marginally related to the underlying alzheimer's like your wife's friend's mother.  Others can continue to linger and decline for years.  I've talked to people whose experience with it was short and I've talked to people who had a "technically living" relative who didn't know who they were for a decade or more.  

grillrat

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Re: OT: Dementia/Alzheimers
« Reply #32 on: October 23, 2020, 12:36:06 PM »
Don't know if Marysville is within the distance of assisted living that you are looking for, but my firm helped design Walnut Crossing which had a decent looking Memory Care wing.

https://www.walnutcrossingliving.com/living-options/memory-care/


medinabuckeye1

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Re: OT: Dementia/Alzheimers
« Reply #33 on: October 24, 2020, 08:46:58 AM »
Don't know if Marysville is within the distance of assisted living that you are looking for, but my firm helped design Walnut Crossing which had a decent looking Memory Care wing.

https://www.walnutcrossingliving.com/living-options/memory-care/
Thank you, but too far for us.  

medinabuckeye1

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Re: OT: Dementia/Alzheimers
« Reply #34 on: January 08, 2021, 03:28:14 PM »
Bumping for an update:

We didn't end up moving dad to Assisted Living yet because with the pandemic there are risks involved and because if he goes in, his five grandchildren (my brother's three kids are 6, 4, and 2; my two are 21 months and 3 months) would probably never get to see him again.  

My brother and I did watch most of Ohio State's games with him this season so that is good but unfortunately, he has no idea what is going on.  He is happy to be with us watching a game but he can't follow it.  Throughout the game he'll keep asking who is playing, who is winning, what is going on, etc.  

We now have 24x7 home healthcare but dad has deteriorated.  I had squad take him to the ER last month because his heart was acting up.  He was in A-Fib and it took them almost a week of tweaking medications to get his heart rhythm back to right.  

About 2-3 days after he was discharged from the Hospital, he came down with a fever, cough, shortness of breath, etc.  We were worried that he had gotten COVID in the hospital.  We went to the Doc and got a COVID test which was negative.  They did a chest X-ray and found fluid in the lungs so they thought it was pneumonia and put him on a seven day course of antibiotics to kick the pneumonia.  A week and a half later another chest X-Ray still showed fluid so the Doc gave him another 14 days of antibiotics still thinking it was pneumonia.  

Earlier this week I spent a lot of time texting back and forth with the home health aids to get his vitals (blood oxygen, BP, pulse, etc) then calling those in to the Doc to get advice.  Finally yesterday I took him back to the ER on the advice of the Doc because they couldn't figure out what was wrong without tests that he would need to be in the hospital for.  

I never thought I'd make this statement, but unfortunately it is not pneumonia.  The fluid in his lungs isn't due to some temporary infection that can be cured with a course of antibiotics (pneumonia), it is a byproduct of his congestive heart failure which the ICU Doc I just talked with now refers to as "end stage".  

Years ago we talked about a DNR.  It wasn't an emotional thing for me at all because we were in a lawyer's office and the whole thing was an intangible, hypothetical issue.  Today I stood next to my dad's hospital bed while a Doctor stood across the bed from me and asked me if they should attempt to resuscitate him if his heart stops.  Worse, the "if" in that question sounded more like a "when" because apparently his heart rhythm still isn't right and it is doing something that frequently results in cardiac arrest.  

This is no longer an intangible hypothetical.  That was all too real and hit me like a ton of bricks.  The pandemic makes it immeasurably worse because my mom and brother are not in the hospital with me and can't even visit.  Due to the COVID spike the hospital only allows one visitor (not just at a time, one for the duration of the stay) and I am the designated visitor.  

Fourty-five years ago my dad drove me home from the hospital and that was my first car ride.  Yesterday evening I drove him to that same hospital and right now it looks like that may well have been his last car ride.  Life has an odd symmetry sometimes.  

The progressing dementia and the ongoing congestive heart failure unfortunately exacerbate each other.  The dementia is made worse by the limited blood flow and blood oxygenation and the CHF is made more difficult to treat by the fact that the patient is almost completely unable to articulate what he is feeling at the present time let alone to be able to talk about what he felt five minutes ago.  

Enjoy every day.  

My dad always used to say "Try to make the world a little better place for your having been here."  Do that.  

847badgerfan

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Re: OT: Dementia/Alzheimers
« Reply #35 on: January 08, 2021, 03:31:29 PM »
My sympathy goes out to you, old friend.
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FearlessF

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Re: OT: Dementia/Alzheimers
« Reply #36 on: January 08, 2021, 03:40:14 PM »
you have my sympathy as well.  Tough duty for sure

Take a small solace in that I'm sure your Dad made the world a little better place
"Courage; Generosity; Fairness; Honor; In these are the true awards of manly sport."

MrNubbz

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Re: OT: Dementia/Alzheimers
« Reply #37 on: January 08, 2021, 03:45:24 PM »
Very tough set of circumstances MB,as previously stated my mom went thru this sans the threat of covid.Your dad is fortunate to have a tight family - he did a good job.Just know that even if you could have everyone there,every day he really wouldn't know it.Everything that was possible and with in reason has been done,best wishes
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TyphonInc

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Re: OT: Dementia/Alzheimers
« Reply #38 on: January 08, 2021, 03:52:28 PM »
He raised you right MB, the world is a better place for his efforts.

My condolences friend.

CWSooner

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Re: OT: Dementia/Alzheimers
« Reply #39 on: January 08, 2021, 05:59:42 PM »
Great OP, Medina, and great discussion.

I lost a friend of 16 years last spring.  He had very mild Parkinson's when I met him.  It got progressively worse, of course, and then came the associated Lewy body dementia.  Today, cleaning out my car, I found the receipt for the last time I took Saturday lunch to him in memory care.  It was from On the Border Mexican Grill and Cantina. A burrito dinner for me, an enchilada dinner for him.  He loved Mexican food, barbecue, pizza, and hamburgers from small, family-owned burger joints.  I can't drive anywhere in the Tulsa metro area without passing some little restaurant we hit once, twice, or 50 times.

My mother has been drifting into dementia for over five years and now she's really there and deteriorating rapidly.  When we finally took the car keys from her about 3-1/2 years ago, it was past the time we should have done that.  Fortunately, she hadn't hurt anybody.  We're moving her at the end of the month from an apartment at a senior apartment complex to a much smaller one at a nice complex that accommodates a transition from independent living to assisted living to memory care.  A couple of years ago, I though she could live for another 10 years.  Now, I'm not sure if she'll last another 10 months.
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ELA

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Re: OT: Dementia/Alzheimers
« Reply #40 on: January 08, 2021, 06:10:48 PM »
Feel horrible for you, but I'm glad you could be there for him.

TyphonInc

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Re: OT: Dementia/Alzheimers
« Reply #41 on: January 10, 2021, 08:09:01 AM »
Been praying for you Medina.

My son passed Michigan week 2012. I know in the grand scheme of life Football is pretty insignificant, but during that game it was the first time I smiled. Death is hard, confusing, sad and frustrating all mixed together. Look for those things that can bring you and your family some comfort as you figure out the new normal. 

For me it was Buckeye football. If you are up for it, keep giving us updates, and we, these semi-anonymous internet friends, will keep responding. Hope you can take some moments of solace Monday night.

Cheers, and Best Wishes.
Ty

 

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