Project Fixation?

azoverwhelmed

I've been reading the forums for a while but haven't posted yet. I'm an in-home and now stay-at-home caregiver for my LO (who is my grandparent, but I'm 40 years old and fully adult). 

Currently, LO wavers back and forth between several middle stages; there are days when LO assumes I'm my mom (who passed away when I was 17), or asks to go home when we're sitting in our own kitchen, asks how many cars we have, and otherwise gets lost in time, and days when LO is up and about on some initiative and very fixated on it.

Lately that initiative has been "calendars", which must be constructed in a very specific way to specifications dictated to me repeatedly--sometimes for an hour or more. The three big calendars I have set up in the house (one on a chalkboard surface applied to the back of the bedroom door that tells the day of the week, month & date; one on a whiteboard that contains an overview of the entire month with important dates, and several other standard calendars like you'd buy at the store). The fixation on day and date and calendars has become extremely strong, and to an extent, I understand the attempt to feel control. LO has started to accept that they have alzheimers and has fixated on time/date as an aspect of holding onto control.

However, my trouble is that while LO wants calendars made a specific way, they also demand that I, personally, make it with my own hands to their specifications. LO understands that I am a creative person, and I think is trying to include that in their projects. The trouble is that they are fixated on doing it over and over, and I'm a.) responsible for all the other chores in the house which require time to do and b.) only so interested in expending all of my creative efforts to make what is essentially my third "list of days" style calendar with whatever quote they wants on it for the week. I've tried encouraging LO to make it on their own or to do it while I'm sitting nearby and working on a project that isn't the mental equivalent of chewing cardboard to me, and even told them I'd put the quote on in pretty handwriting if they'll make the list that they want themselves, but they insist they have absolutely no talent and need it to be done by me.

I have, of course, already done it. When we are not actively working on it, LO insists on laying out plans for the calendar with me, or thinks that "what if we made a bunch to sell"--which really means, what if I did all the work, drained my creative energy, and we essentially wound up with a reinvented wheel. 

I'm doing my best to understand and redirect, but there's just enough memory of me saying "okay, well, I'm literally doing all of the physical labor right now it requires to keep the house clean" that she will then come at me a couple hours later and I have to sit through the hour long calendar seminar again. 

Any thoughts??

harshedbuzz

azoverwhelmed-

Hello and welcome. 

I am glad you found us but sorry for your need to be here.

It sounds to me as if the calendars have become an anxiety provoking trigger for them. It is possible the information on them makes no sense to your LO at this point if they're already mistaking you for a child who passed or oriented to their home. You are the schedule keeper and memory for them-- they no longer need advanced information about what's coming up in their lives. 

I would remove them and paint over the door. Out of sight is out of mind for most PWD after a fairly short time. If your LO has a tendency to want to be "busy" I would look into a day program to engage them and given yourself some mental space.

HB

azoverwhelmed

I'm hesitant to completely discourage LO's engaged endeavors because the other option is they watch TV all day. They were never a creative person and don't enjoy any pursuits except watching the news (and never have).  It's news 24/7 and complete disengagement from anything else except to come and tell me about the news. 

SOME days they clearly know who I am. SOME days they mistake me for my own mother. On the days they clearly know who I am, trying to handle them like I do on the days they do not is a recipe for immediate disaster and resentment/anger. I am doing my best to handle things and be ready for the more lucid days. 

I did try a day program a couple of years ago but no good. She wants to only watch the news while she's there and feels the other people's political beliefs should more align with hers or doesn't believe she belongs there, tells the staff to call me repeatedly to come and get her, etc. It's less stress for ME not to be fielding constant calls from the day program staff (there is only one in town). 

However, I'll do my best to try and keep redirecting away from the calendars. 

dayn2nite2

"No." is a complete sentence.

Your participation isn't helping him and in fact this is causing more anxiety/agitation.  Stop participating.

If they were drinking themselves to death or walking until exhaustion, that would be something to worry about.  If they watch TV all day, who cares?

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azoverwhelmed

OK. Well, as I'm not the one making the statements or initiating the conversations I'll do my best to point them away. I think it may have come across that I'm the one telling LO that they have ALZ over and over. I'm absolutely not--they are telling themself, or informing me, or informing anyone that will listen without the topic being brought up. I have done my best to get people LO talks to on board with redirecting, but I'm also not going to sit next to them and constantly monitor their conversation with their son & daughter (in other states)...

However son & daughter have been encouraging LO to "do projects that they are passionate about". (Which is a natural thing to want to encourage your loved one to do). 

As for me, I'm trying to be available TO soothe them, but the only thing that seems to do so is to listen & agree to participate  with this project. I will try saying 'no', but all that's resulted in is me being handed handwritten notes about the project 'for later'.  I don't feel it's fair to then start taking the writing supplies away and force them to have no option but to vegetate in front of CNN

jmlarue

Defer and redirect. Make up a file folder labeled PROJECTS. Whenever your LO wants to get into the discussion with you, say something like: "You always have great ideas, BUT I need to do XYZ right now. Write down your ideas and put them in this file folder so we can talk about it later when I'm not so busy." Rinse and repeat. Don't allow the file folder to collect dozens of notes. Take out all except a few. When they start talking about the project again, show them those few notes and ask them to make more so you have some good ideas to work with - when you have time to talk.

Watching non-stop news is a recipe for disaster. Be assured that it will only result in anger and agitation. No doubt your TV has the ability to program "Parental Controls" to block certain channels. Block CNN. When it doesn't work for them, tell them that you'll contact the cable company about fixing it - meantime, watch this nice nature documentary or game show. I think it's wise to limit news shows or discussion shows (like "The View), but I see no good reason for limiting TV viewing overall. You're not taking care of a child whose brain is still developing. You're caring for an old person whose brain is dying. No harm, no foul to watching TV that is entertaining and not provocative.

You do not need to be a slave to their repetitive behavior. Defer, redirect, and use plausible fiblets to get some control back of your own time and patience.

azoverwhelmed

This has definitely progressed to a mania level. I have removed as many of the calendars as LO won't notice gone and get upset about, but I have conflicting information from various different places--having the date & time available will empower independence. Having the date and time available will make a PWD feel more lost. Letting them do repetetive behaviors is harmless; letting them do it is self-stimulating for stress & anxiety levels.

HOWEVER, LO is clearly stressed and upset while doing these tasks, their thoughts are racing and they're not sleeping, instead getting up to organize. I stopped the calendar project but now they are fixated on the idea of structuring themself out of alzheimer's--organizing and re-organizing things. I have minimized as much as possible, try to make sure there are comforting activities every day. LO doesn't want to do those activities, they want to write lists of phone numbers...

I have had to remove every phone book and old notebook from the house because LO was calling random people and "making appointments", which they would write scripts for that basically amounted to "I'm 80 and I have alzheimers and I think it's really hard and I'm 80 and I have alzheimers..."

I think I have narrowed this down to a med change that happened at the top of last month. PCP put LO on 5mg of donepezil, and for a while that was ok. Upped to 10mg--became a complete zombie, described flulike symptoms & body aches--reduced to 5 again and back on their feet but since then it's, as I've been describing it "Meth Grandparent"

Can't sit still, can't enjoy old activities, cannot relax, insisting on, in their words "STRUCTURE STRUCTURE STRUCTURE", and getting upset w/me when I try to redirect. This is so far from the norm and so sudden onset that I've scheduled apt with PCP and I'm going to ask for a discontinue on this med and HOPE the massive wave of anxiety passes for LO. It's hard to watch. I have worked with Meth patients a long time ago and the compulsive behavior/immediate upset when I try to redirect is very reminiscent of that. I'm just hoping the donepezil hasn't put LO in a worse place.

Mania with no chance of satisfaction (b/c LO doesn't remember getting the answer they were just seeking) and no chance to relax must be real, absolute torture for them, but also I am two steps away from snapping and the one accredited in-home respite care agency in town is on "we'll call you" status for the forseeable future...