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Old 12-10-2018, 08:42 AM
 
Location: Wonderland
67,637 posts, read 60,168,407 times
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Oh my gosh, reading this is like reading the story of my mom's earlier years with dementia. Now of course, it's progressed much further.

My dad died about the time some of Mom's symptoms were becoming harder to justify, but I'd say she still had early dementia at worst - it was hard to tell where "unorthodox behavior" and mental health issues, and stroke damage, and dementia sort of met, if that makes sense. Hindsight is 20/20 of course, but let's just say I am so glad that my dad didn't have to see his beloved, beautiful wife fall into the grips of dementia.

But the behaviors you're describing now are more along the line of moderate dementia quickly clipping along and this is probably THE MOST trying time, not just for caregivers but probably for the person suffering the dementia as well. They are not so incapacitated that they don't KNOW something is not working right with their brain. This was the point where the assisted living facility told us that Mom needed to go to a memory care facility. I am so glad we moved her when we did, because within a few months - a very few months - she was completely unable to care for herself and there was no way I could have done it on my own, or even with one caregiver coming in regularly. The reason being - like your Mom, my mom didn't keep any sort of regular eating and sleeping schedule, and she'd do things exactly like you're describing, with other people which would make me look weird. Not only that, but it was about this time that taking her out shopping, eating out, etc. because problematic because she started doing inappropriate things.

And there was NO CONVINCING HER to cooperate or alter her behaviors. None whatsoever. I remember at one point she called me (I lived about 15 minutes away) and told me that she couldn't find her keyboard. HER KEYBOARD. How does one lose a keyboard in a 700 square foot apartment - or in any size home for that matter? I didn't believe her, frankly, but lo and behold, when I went over there, her keyboard was gone. I told my husband, "When we clean out this apartment, we will find that stupid keyboard," and yes, we did, hidden up under some items in the closet.

See, she also started hiding things. And calling people. And telling them all sorts of bizarre things. She also got fixated on when to go to church, just like you are describing! And she started calling me in the middle of the night just to chat. God only knows who else she was calling.

One thing you may want to do speaking of calling, is disable any preprogrammed phone numbers in the phone, and then find her address book and get it out of there. I doubt she will have the ability to recall numbers for much longer, sad to say, if she still has that ability. With the mail, yes, I would get a PO box and change the addresses myself. She will still get junk mail so she probably won't even notice. I'd just stop buying weird food but harmless stuff like bananas - well, just let her do her thing.

The thing is, none of this is a permanent fix. You are just buying time so prepare for that bought time to continue to be frustrating. She IS going to have to move to a facility, so use this time to start making plans and looking at options. Things are going to get a lot worse, believe me.

I am so sad you're going through this.
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Old 12-10-2018, 08:58 AM
 
28,107 posts, read 63,374,410 times
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Originally Posted by wasel View Post
I would get a PO box if I were you. Sure it requires a trip to the post office (or UPS store) to get the daily mail but it will save a lot of hassle in the long run if something important gets taken from the mail and hidden.


I'm sorry you are going through this. It's clear to see what paid caregivers face when clients tell their family members "I haven't eaten" when they actually have.



Unfortunately she is getting out of the house at dawn and it's winter. You don't think an overnight caregiver is a good idea? ETA sorry that sounded snarky, not meant to be. I just recall your thinking about pros and cons of a caregiver and I was revisiting that.
Alzheimers wards now have secure or at least alarmed exit doors... I had seen on facility that had been around a long time upgrading.

Thought about doing something similar.

We live in California... Heat or Frost is quite rare here in SF Bay.

Went to my brothers yesterday... spent about 8 hours there... I made dinner as they always have things to do around the Farm...

The tension level dropped and Mom had a very good time... it was like a switch was turned.

She did say it was getting late... 8 pm and we should be leaving soon.

On the drive back she kept saying nothing looks familiar and asked if I was going a new way home... I said no... only one way and this is the same way she drove for many years...

Got home at 9 and I said time for bed... I get up at 3:45 am for work... she said 9 is an odd time to go to bed... most people have already had breakfast and are at work... I said it is 9 at night... she was not buying it.
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Old 12-10-2018, 09:03 AM
 
28,107 posts, read 63,374,410 times
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Originally Posted by in_newengland View Post
Ultrarunner I don't know how you stand it. I commend you.

The hiding stuff, the hoarding everything is like my cousin. OMG, her garage, guestroom, full of broken stuff that she had to save.

I was going to suggest the p.o. box too.

As for the phone calls in the middle of the night, can you disconnect the landline and just use your cell phone?

It must be embarrassing to you when she does stuff with the neighbors. Calling them, saying she has no food, etc.

We get blamed for what they do. That makes it worse.
Pretty much sums it up... thankfully the neighbors of 50 years realize... the man next door is 94... just renewed his license and has been driving legally since age 14... they lived rural on a farm and his father was injured so as the oldest child he got a special California Driver's License.

That said... 94 year olds, even in good health don't appreciate someone at that front door at 5 am...

He is gracious and is the neighbor that lets me use his garbage can to toss trash...

The church people are not so understanding...
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Old 12-10-2018, 09:14 AM
 
28,107 posts, read 63,374,410 times
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Originally Posted by KathrynAragon View Post
See, she also started hiding things. And calling people. And telling them all sorts of bizarre things. She also got fixated on when to go to church, just like you are describing! And she started calling me in the middle of the night just to chat. God only knows who else she was calling.

One thing you may want to do speaking of calling, is disable any preprogrammed phone numbers in the phone, and then find her address book and get it out of there. I doubt she will have the ability to recall numbers for much longer, sad to say, if she still has that ability. With the mail, yes, I would get a PO box and change the addresses myself. She will still get junk mail so she probably won't even notice. I'd just stop buying weird food but harmless stuff like bananas - well, just let her do her thing.

The thing is, none of this is a permanent fix. You are just buying time so prepare for that bought time to continue to be frustrating. She IS going to have to move to a facility, so use this time to start making plans and looking at options. Things are going to get a lot worse, believe me.

I am so sad you're going through this.
The church thing is the one that has me perplexed... church is now only 3 times a week... that is it... no more daily mass since no priest in residence... and the Saturday evening is in lieu of Sunday... so really only Wednesday and Sunday...

I have been taking her each Sunday... just the way it is.

What gets me is half our conversation is about church... getting ready, being on time... reminding others... especially neighbors that are not church going and should be because they are good people...

So on the way to my brothers... which she really wanted to go... she got very sad... almost in tears.

She said it is Sunday and instead of going to my brothers... we should be in church and how disappointed she is because she can't drive there anyone and it is like being kidnapped... 50 years at this church 4 times a week... and 66 years driving with no accidents or ticket... For some reason she knows 100% she no longer has a license... that fact is solid since day one... when she failed her renewal test.

I said Mom... we just left church... remember, a family was sitting were you normally sit and your friend passed out the new 2019 calendars? She did remember by saying was that today... I said about 20 minutes ago.

Not my proudest moment... but I said think about it... if you don't remember even going why all the fuss?

Might have to be a private PO box... the local Post Office is one with bullet proof glass... worst area of town with the highest crime rate in East Oakland and a wait list for boxes... they had to remove the after hours mail drop box because it was getting broken into and patrons robbed.
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Old 12-10-2018, 09:58 AM
 
Location: Wonderland
67,637 posts, read 60,168,407 times
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Quote:
Originally Posted by Ultrarunner View Post
The church thing is the one that has me perplexed... church is now only 3 times a week... that is it... no more daily mass since no priest in residence... and the Saturday evening is in lieu of Sunday... so really only Wednesday and Sunday...

I have been taking her each Sunday... just the way it is.

What gets me is half our conversation is about church... getting ready, being on time... reminding others... especially neighbors that are not church going and should be because they are good people...

So on the way to my brothers... which she really wanted to go... she got very sad... almost in tears.

She said it is Sunday and instead of going to my brothers... we should be in church and how disappointed she is because she can't drive there anyone and it is like being kidnapped... 50 years at this church 4 times a week... and 66 years driving with no accidents or ticket... For some reason she knows 100% she no longer has a license... that fact is solid since day one... when she failed her renewal test.

I said Mom... we just left church... remember, a family was sitting were you normally sit and your friend passed out the new 2019 calendars? She did remember by saying was that today... I said about 20 minutes ago.

Not my proudest moment... but I said think about it... if you don't remember even going why all the fuss?

Might have to be a private PO box... the local Post Office is one with bullet proof glass... worst area of town with the highest crime rate in East Oakland and a wait list for boxes... they had to remove the after hours mail drop box because it was getting broken into and patrons robbed.
Oh my. I have some "unproud moments" myself regarding my mom in that stage. Mainly trying to reason with her. It was IMPOSSIBLE.

I don't understand the fixation with church either but boy my mom had it. She was living in an ALF and they had a bus that took residents to various churches, and I wanted her to retain that level of ability for as long as possible. I mean, she wanted so desperately to go to Sunday school as well as church and though I attend the same church, I just wasn't up for picking her up, taking her there, sitting in a boring class, and then church, and then taking her out to eat and then home. It was already several hours on Sunday and then several other times a week. I just didn't have the fortitude between that AND all the real estate and other estate stuff I was sorting through - hours and hours of physical work, and travel, and paperwork, and appointments with various people, every single week. Honestly, you know, I had a full life BEFORE taking on her life as well. I was frustrated, sad, overwhelmed...and then to add insult to injury, she was ornery on so many levels, some of that nearly certainly stemming from fear.

And she was argumentative, too, which was very trying because SHE MADE VERY LITTLE SENSE when it came to time lines especially and I just could not reason with her.

I got a huge clock for her living room - no help. I got a white board and left notes on it - very little help at first and then pretty soon, no help at all. I got a timed release thingie for her meds which she had to take twice a day. That worked for a little while (just a couple of months) and then she figured out she could turn it upside down (and cover it with a towel????) and it wouldn't go off. So that was $200 that didn't work for long. Then I hired a woman to come in and give her her meds twice a day - but she ran her off, after arguing with her illogically for weeks. I SIMPLY WAS NOT GOING TO GO OVER THERE EVERY SINGLE DAY, let alone twice a day, on top of all the other stuff I was doing for her.

She was wearing me absolutely out - and I didn't even live with her! And honestly, I wouldn't have been able to keep her safe even if I lived with her or she lived with me, because she would get up at all hours of the night doing God only knows what.

Another thing she did was she started unplugging everything, all the time. She would have lost her mind (and I would have lost mine) if she'd been living in my house. I remember one time she called me and said "I can't get my computer to work," and she had unplugged everything. Grrrr. She assured me over the phone that she hadn't done that, but she had.

When she realized that two lamps were plugged in behind a piece of furniture that she couldn't move (not for lack of trying I might add), she took out the light bulbs. When I asked her about that, she denied it.

She had and still has a fear and fixation regarding fires. She's never had a traumatic event with a fire that I know of so I have no idea where that came from. She is absolutely, to this day, convinced that the woods behind her memory care center are going to catch on fire, and she insists that her facility posted warning signs regarding potential fires from those woods, all through the halls where she lives (absolutely not true). She can now barely talk and she's STILL talking about those woods catching fire.

A year ago this week is when we moved her from the ALF to a memory care center. At the time, I wondered if we weren't jumping the gun, because she was completely mobile, could eat and use the toilet by herself, could get dressed with some help but overall she needed guidance, but now I know that they knew what we didn't know - that her time line was short between her level of impairment and total impairment. Within 7 months she was under hospice care (which is where she is now) and within 9 months she was basically bedridden. I mean, they still get her up and in a wheelchair, but she's bedridden more and more now and in the wheelchair, she slumps so badly (and occasionally slides out) that it's pretty counterproductive.

The moderate stage, which is where your mom seems to be, is THE most difficult and often the most heartbreaking. In my experience, though, it's fairly short lived. For my MIL (Alzheimer's) it was about 8 months. For my mom (vascular dementia) it was about the same. YMMV. But this stage is the stage where we moved both our moms to memory care facilities.
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Old 12-10-2018, 12:36 PM
 
28,107 posts, read 63,374,410 times
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It does seem to corelate with moderate stage...

In public or in brief encouters people are amazed how fit she is... and being soft spoken often not a clue as to memory issues.

Somethings she remembers without fail and this includes extends to the young Grandchildren... but she will later see my Sister In Law and ask who are you again?

Unplugging... I got her a large digital clock and my boss bought me one for Mom...

I am forever replacing the back up batteries... she is always unplugging the "Light" and the alarm clock to save money... but the batteries are not cheap.

Very security aware... locking doors... locking me out taking out the trash and pulling all the blinds/drapes to make it hard for bad people.

Finance is a new worry... I told her she and dad worked hard and saved... she has no worries... as much as she holds church as Number One... her tithing has dropped from decades giving $20 or $25 to .25 cents...

I make sure the nephews and nieces have birthday and Christmas money... and encourage Mom to do more... out of the blue she will ask for a $5 for a birthday card... then I say OK but you gave the other kids $50... why not make it all the same... keeping it all done by check has helped a lot... no question as to money coming in and going out...

This Christmas I will suggest upping the kid amount to maybe $250 and forgetting the adults...

The work ups mom had ruled out vascular...
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Old 12-10-2018, 02:36 PM
 
Location: near bears but at least no snakes
26,633 posts, read 28,419,191 times
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My cousin must be mid stage too. Problem is, she's physically fine. Doesn't need help with anything and chooses her daily clothing combinations beatifully. She can also carry on an intelligent conversation, even intellectual.

But does she know her parents are dead? Does she know the name of the town she lived in all those years?

At home she was miserable and doing crazy things. In May, when she entered the facility, she did great, all happy and laughing. Now she is crying all day long.

Maybe at first she thought this was trmporary. But I told her otherwise. Maybe it didn't sink in. She says it's like being in prison. I wish she would go downhill, but it seems that she is well aware of the situation.

Ultrarunner, one thing about putting the person into a facility: you know they are safe. And for us, there is the telief from them bothering the neighbors. They have a structured time schedule, meals, etc.
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Old 12-10-2018, 04:40 PM
 
Location: Wonderland
67,637 posts, read 60,168,407 times
Reputation: 100946
Quote:
Originally Posted by Ultrarunner View Post
It does seem to corelate with moderate stage...

In public or in brief encouters people are amazed how fit she is... and being soft spoken often not a clue as to memory issues.

Somethings she remembers without fail and this includes extends to the young Grandchildren... but she will later see my Sister In Law and ask who are you again?

Unplugging... I got her a large digital clock and my boss bought me one for Mom...

I am forever replacing the back up batteries... she is always unplugging the "Light" and the alarm clock to save money... but the batteries are not cheap.

Very security aware... locking doors... locking me out taking out the trash and pulling all the blinds/drapes to make it hard for bad people.

Finance is a new worry... I told her she and dad worked hard and saved... she has no worries... as much as she holds church as Number One... her tithing has dropped from decades giving $20 or $25 to .25 cents...

I make sure the nephews and nieces have birthday and Christmas money... and encourage Mom to do more... out of the blue she will ask for a $5 for a birthday card... then I say OK but you gave the other kids $50... why not make it all the same... keeping it all done by check has helped a lot... no question as to money coming in and going out...

This Christmas I will suggest upping the kid amount to maybe $250 and forgetting the adults...

The work ups mom had ruled out vascular...
Goodness - it does sound like she has probably mid stage dementia - it will progress.

Alzheimer's accounts for 80 percent of dementia cases, and vascular is about 10 percent though it's the second highest percentage. All other types make up the last 10 percent.

And from what I understand, Alzheimer's is not really able to be diagnosed with lab work or imagery. It's more symptom-diagnosed and I think many doctors will rule out other forms (such as vascular) first.

At the end of the day, it seems that all forms have the same sad outcome though.
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Old 12-10-2018, 10:43 PM
 
28,107 posts, read 63,374,410 times
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One thing that seems to help is Mom's Doc suggested melatonin... 3mg before bed.

I have noticed she tends to sleep much better with it and no problem taking it.

Her only meds are eye drops... Eye Doc wants her to have cataract procedure January... I am not sure as she reads the paper/watches TV and can tell you license plate numbers of cars turning around outside.

The Doc is one that she use to work for and one I work with now... but still... I'm not one to force the situation and she has said she would rather wait and just got new glasses and this is when it came about.

You guys have been great and provide a lot of insight...
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Old 12-11-2018, 03:36 PM
 
Location: near bears but at least no snakes
26,633 posts, read 28,419,191 times
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Originally Posted by Ultrarunner View Post
One thing that seems to help is Mom's Doc suggested melatonin... 3mg before bed.

I have noticed she tends to sleep much better with it and no problem taking it.

Her only meds are eye drops... Eye Doc wants her to have cataract procedure January... I am not sure as she reads the paper/watches TV and can tell you license plate numbers of cars turning around outside.

The Doc is one that she use to work for and one I work with now... but still... I'm not one to force the situation and she has said she would rather wait and just got new glasses and this is when it came about.

You guys have been great and provide a lot of insight...
Cataracts. I had the surgery 2 years ago. I could see but things looked a little dark and gray instead of colorful. If the dr says she needs the surgery, he's probably right. A lot of people can see well but they need the surgery.

It consists of eyedrops for a few days and that is very important. You might want to hire a nurse to come and do it according to schedule. Then you take her to surgery and it's zap. She has to go back the next day to be checked and drops need to be continued.

If she were in a facility, they would take care of all that.
Medicare covers it at $200 per eye. Medicare will pay for glasses after the surgery. It would be silly to get new gladses before cataract surgery.
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