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Is This Normal?(7)
Pirokp
Posted: Tuesday, October 8, 2019 3:06 PM
Joined: 9/15/2019
Posts: 30


Hi,
I am not sure I am cut out for this 24/7 care, I have only been at it for a little over a month and I am excused.  

My Dad was up at 12:30am this morning dressed and ready for his 11:30am Dr appt.  I couldn’t reason with him.  I kept saying “it’s the middle of the night Dad”, or “we can sleep for another 7 hours”.  I showed him his 3x5 notecards that we wrote together with what time to wake up and what time to leave.  It was like time meant nothing to him.  He just wanted to go to the dr, he kept saying “you don’t understand it takes times to get there”.  It’s really only 4 miles away.   

At 3:00am he finally went back in his room and closed his door but his light was on.  Unfortunately I fell back to sleep so I don’t know if he even laid back down. At 6:45am he opened his bedroom door and said “anyone there”.   I got up and he was still dressed and ready for the Dr.  I couldn’t make him understand his appointment was at 11:30, he got angry and agitated. I finally just drove him to the drs.  We were at the drs at 8:30 for a 11:30 appointment. He never initiated conversation with me while we waited those 3 hours, just stared ahead watching people.  He never even read a magazine.  I tried to think of things to talk about but how often can I mention the weather or cute kids in the waiting room. 

Is this whole experience normal?  I can’t find a stage that really lists this.  


mostlyme
Posted: Tuesday, October 8, 2019 3:53 PM
Joined: 12/17/2018
Posts: 240


Ahhh, you're taking me back Pirokp...

My mother is now Stage 6 and that behavior was about 2 years ago.  

I learned to NOT tell her anything in advance.  She fretted over it too much.  It makes sense - the AD brain is unsure so to save face they will get ready and wait and wait and wait.  We knew my mother was ready for care when she started showing up for meals in AL well in advance as she had no idea when she should be there.

Don't feel badly about how everything transpired.  You will get used to taking the reins and using fiblets with your Dad.  It's not normal to you yet so you're out of sorts.  Unfortunately, it is of no use to use rationalizations as they usually won't accept those.  If they don't and they're sticking to their story - just agree with them and then come up with a fiblet to address the situation.

Some ideas for the next time he's dressed and ready to go 12 hours early...

"the doctor's office phoned and your appointment has been changed to next week so you can go back to bed"  (then you got another phone call at 10:30am saying that they can take you after all...)

This is a tough stage.  They haven't crossed the bridge completely and they are fighting for their lives.  It's so hard.  My best to you Pirokp.


star26
Posted: Tuesday, October 8, 2019 4:08 PM
Joined: 2/6/2018
Posts: 8


The confusion, especially regarding time, definitely seems normal. (P.S. I think it's great that he remembers he has an appointment and can get himself dressed!) I had similar situations with my Dad until I tried not telling him about visitors or appointments until it's time to get dressed and/or get up and go. (I build in extra time which he doesn't know about. I always say "we need to leave right now" so he won't delay and try to plan it himself.) At first, I was afraid that he would be upset that he didn't know in advance but that wasn't the case at all.  Maybe because his memory is poor and he assumed I told him but he forgot?  Someone told me early on that it was okay to lie - and it's really helped a lot. You could even say "the doctor just called and ...blah, blah, blah...we need to go to your appointment right now."  

Good Luck and hang in there. I've been at it for almost 2 years and I'm exhausted too and still think "I don't know if I can do this." 

 


MN Chickadee
Posted: Tuesday, October 8, 2019 4:08 PM
Joined: 9/7/2014
Posts: 840


Sigh. Unfortunately it is normal. This kind of thing is why respite is so important. A caregiver can get sooooo burned out. Even if it weren't the middle of the night, just the constant repetition and cajoling take its toll. I would not tell him about appointments until shortly before so it doesn't get stuck in his loop hours or days before. But he may still wake up and focus on something else like thinking it' day time and he should have breakfast at 2 am. 

The night waking/not sleeping is one reason many people end up having to move their loved one to memory care. Unless you have help in the home it can quickly become unsustainable. You might consider an over night hired aide so that you can sleep. Turn some white noise on and know he is safe so you can get some solid interrupted hours. Even a couple times a week would make a difference on your energy and ability to keep going on. And/or get on wait lists for facilities now, so that if and when it becomes too much you have options.

We got my mom on a sleep medication and it worked wonders. We were able to keep her home about a year longer than would have been otherwise possible. If his night waking continues you might consult his physician about trying something. 


jfkoc
Posted: Tuesday, October 8, 2019 4:55 PM
Joined: 12/4/2011
Posts: 17258


Yes. Maybe do not tell your father ahead of time.
Pirokp
Posted: Wednesday, October 9, 2019 10:40 AM
Joined: 9/15/2019
Posts: 30


Thank you everyone.  I think I learned my lesson, don’t tell him about his appointments until day of.  This is all new to me, one step at a time.  Thank you!
twills83
Posted: Thursday, October 10, 2019 12:58 AM
Joined: 10/9/2019
Posts: 23


Haven't had that experience, but actually kind of the opposite.  My Dad thinks it's reasonable to schedule a dinner "for tomorrow" half way around the world.  He is somewhere between stage 4-6 (exhibits some elements of each).

 


S Kay
Posted: Thursday, October 10, 2019 5:54 AM
Joined: 5/31/2019
Posts: 12


My mom has not completely lost track of time yet, but I know this is coming.  She is obsessed with the calendar some days.  She keeps one on her dresser, and I have one on the fridge.  I wish I had never permitted the month long calendars.  I figure I will have to transition to a week at a time soon and next a day at a time.  

Love to hear the ideas on what fiblets work best.  It will be work to get to the point that they just roll off my tongue.   


Janice.alone
Posted: Thursday, October 10, 2019 3:57 PM
Joined: 10/12/2018
Posts: 61


Just a story to add about loosing the sense of time:   I always picked mom up for church on Sunday morning and Wednesday evening because she gave up driving a few years ago.   She was always dressed nicely and happy to go with us.   Then it started......  When I would make my regular morning visit (she lived on our property), she was ready to go to church 3 days a week, then 4 days a week, then every day of the week - always dressed beautifully and anxious to go.   Six days a week I would explain that it wasn't Sunday, so no church today.  I also discovered that often she had been ready and waiting for 3 or 4 hours because she got up in the middle of the night to get ready.   After many months of this routine, she started getting irritated then very angry when I wouldn't take her to church.   I thought she was just loosing track of the days.  I tried using a white-erase board with the days & schedule and nothing seemed to work.   But, one day she said something that made me realize her brain was totally off track.    After I told her it wasn't Sunday, she got quiet and thoughtful for awhile.  Then she said, "Let me ask you something.  Who exactly is it who decides when we go to church?"  I answered that it was God who decided the Sunday service, and probably the Presbyterians came up with the Wednesday night idea.   She sat and thought for awhile longer and asked, "What do all those other people do up there on the days that you won't take me to church?"      Uuhhhhh ??!!??    No wonder she was angry with me.   It wasn't time she lost track of, it was reality.
Emily lynn
Posted: Friday, October 11, 2019 8:03 PM
Joined: 10/11/2019
Posts: 1


Yes this is part of the norm.  My husband asks why i cant fix the clocks. Time is hard for them to comprehend.
Pirokp
Posted: Friday, October 11, 2019 9:19 PM
Joined: 9/15/2019
Posts: 30


Thank you all!  I love all the stories you have told me, makes me smile and helps me to know I am not alone.  Thank you!!!
Dreamer Lost
Posted: Saturday, October 12, 2019 10:33 AM
Joined: 3/7/2019
Posts: 262


Pirokp - I would second what chickadee said about the night waking/not sleeping problem also. You may want to watch your dad's activities and daytime sleeping pattern making sure he gets plenty of sunshine and activity during the day so that it helps him maintain a regular sleep pattern.  I also give my DH melatonin at bedtime along with a weighted blanket.  Some have Rx's for their LO.  Sleep is so important for you.
Rescue mom
Posted: Saturday, October 12, 2019 11:50 AM
Joined: 10/12/2018
Posts: 971


The loss of what I call “time comprehension” was very early for my DH, maybe the actual first big thing. (He also lost all sense of direction and knowing where he was around the same time, and that was bigger to me).

The neurologist and Geri-psych told me it was normal and to be expected.

Very soon after that, he lost the ability to comprehend notes or calendars, so having or showing  him note cards or things written down was no help.

I do not tell him about appointments in advance anymore. Now, I just tell him we have to get dressed (that’s me dressing him) and go. It takes about an hour to get him ready, so I don’t tell him until an hour before we have to go. If he’s told in advance, he gets confused and fretful.

And yes, it all makes life much more complicated and harder for caregivers.


 
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