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Is This Normal?(7)
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.
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.
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."
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.
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).
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.
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.