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How to organize myself around a disorganized LO?
ZackFootInMouth
Posted: Friday, August 5, 2022 2:14 PM
Joined: 8/5/2022
Posts: 36


I am a person who obsessively plans (A, backup B, redundant C, etc) so please bear with me if I ramble.

I am currently paralyzed with paths, figuring out the starting line, and am turning a blind eye to the end goal. None of which makes for the start of a good plan. Working backwards:

Most recently my mother (nearly 80) was finally prescribed donepezil this week after two months of suggesting to her primary care provider look into signs of dementia.

Typically of what I've read on this forum, she's very polite in public. Quiet, terse, and ultimately has a very efficient "poker face" that hides any tics or tells. She will regret things when she gets home (like leaving groceries or change) but holds it together while outside. And she's outside once a week, be it food shopping or gardening, even through bad weather or COVID.

About two years ago her older brother and last surviving family died, in her home country, from cancer. We found out through the news of a family friend living in the city who was inviting us to a funeral of their own. She stopped talking to her brother three years ago, after receiving news of his diagnosis; resigned that "he was dead already". It did not help she disliked her sister-in-law, but is a shame she also cut ties to her niece (who, as a sales rep, is normally difficult to get a hold of).

Her husband passed over five years ago. During the hospital visits, she was very much by his side 24/7 despite hating his guts. I visited daily to bring soups and vegetables to supplement her vending machine Twinkie. When he finally died, she threw everything that was deemed "his" out the door in trash bags. Mostly clothes, some photographs, lots of old utility bills, and possibly some jewelry and photocopies of important documents.

Back in 2010 it was pretty apparent my mother was a "kept woman". She had hit retirement age and didn't have finances of her own, she never managed the bills (though she did know what they were), and had difficulties applying for social security and Medicare.

Now in 2020, the home is paid off and in her name. She has a monthly stipend from my father's pension that covers insurance and utilities. She still lacks the paperwork for Medicaid, but she has Medicare. And I pitch in for food, cooking, and the occasional reminder to pay the bills. I thought this was a healthy balance.

Then she started seeing things in the middle of the night. Calling the neighbors secret demons behind their backs. Using her sweet outdoor voice indoors with me. Losing her vocabulary. Blaming misplacement of items on others. She stopped taking her medications regularly (for osteoporosis and blood pressure).

At one point, around this past Christmas, she stopped sleeping in a bed and began sleeping on a chair or on the floor by the front door, sure to catch those demons (sometimes the west neighbors, sometimes the east neighbors, and it's always the opposite side that's good and should be rewarded for helping look out against the evil side) in the act of entering through the now barricaded doors and windows.

I came to these forums in 2020 and... I never registered. Frankly I thought this was too depressing and I couldn't take what came next. I'm here at 'next' and I still can't take the proper steps.

On her good times, she can still be mobile, pull weeds, make phone calls, and eat heartily. On the bad times, she can have terrible migraines, nausea, dehydration, water poisoning, starvation, and depression. I'm currently trying to convince her to take these dementia medications before I can convince her to take them as part of a routine. I've prepared meals and portions for her that she ignores (and instead searches out candy or cookies). Whenever I leave her alone, I call back every few hours to assure her I'm within reach, also to make sure she unbarricades the doors when I get back. She will not leave the house if I'm out (because the demons will squat). The doctor's office contacted me this week to plan out her various scans this week because she defaulted from her polite routine and began talking in her native dialect (replacing some nouns with my name).

I was supposed to register on these forums to ask where to go, but it's turned out into some weird life recap. Sarcastically joking, I'm losing hope that I can teach her how to make the most of her bank account. (My father married her with the promise he'd teach her that, how to drive, etc. Though in practice, that fell to me and I worked in reverse.)


ZackFootInMouth
Posted: Friday, August 5, 2022 2:19 PM
Joined: 8/5/2022
Posts: 36


Reading over this, wow, I really do not know where to go from here. If I need assistance or just find a facility, much less payment options.

A recent post by quartlow2 made me realize I'm part of the process, and also the problem. I need to work in shifts, but the only friends of my mother's are either out of state, out of country, or have their own family to deal with.

My writer's experience says I need to ruminate on this thread for a few weeks, but my panic button says everything is on fire I need to put the fire out immediately. Should I be more proactive? How do I do that? This seems overly intrusive; are other alternatives out there?


Victoria2020
Posted: Friday, August 5, 2022 3:00 PM
Joined: 9/21/2017
Posts: 1494


Hey Zack- yes , this is the hardest time I think-- like Alice with the cards flying around her head. It will get better once her finances and care are in control.

First stop, seeing a CELA lawyer to see what papers she can still have prepared to have you handle things for her. If she is too far along you may have to go to court.

At her age, with dementia she isn't able to now learn to handle her finances. There is no balance to be achieved since her abilities are just going one way. Keeping her safe and calm are the goals versus "as independent as possible."

I hope she isn't driving , if she is that should stop.

Yes, now is the time to step-in , if you can't see doing it yourself the lawyer can give you options. But right now her assets are at risk from scammers etc.

Good luck.

 

 


dayn2nite2
Posted: Friday, August 5, 2022 3:09 PM
Joined: 6/20/2016
Posts: 3318


Forget about getting her to take dementia medications.  They won't work and only serve as an aggravation for you (she doesn't care, so not aggravated).

You will need to see that the bills get paid, she is unable to.

If she is having hallucinations/delusions, she needs a geriatric psychiatrist.
Iris L.
Posted: Friday, August 5, 2022 11:27 PM
Joined: 12/15/2011
Posts: 18248


Read about anosognosia, and you will understand why you need to take charge now.  How is she eating? Is she cooking on the stove?  You need to dementia-proof the house.

Iris L.


HollyBerry
Posted: Saturday, August 6, 2022 2:59 PM
Joined: 8/1/2022
Posts: 24


If I had to make a list for you, it might look like this:

 

1. Finances. Pile every piece of paper in a laundry basket and sort it out. Put the bills on autopay. Make the appointment with the lawyer. Talk to your siblings.

2. Safety. Under the guise of "helping," make sure you and others can get into the house whether she wants you to, or not. Tell her you're helping her keep the intruders out, if that helps.

3. Assistance. You both need it. Meals on wheels? Housekeeping help? Yard work? Don't try to do it all yourself, even if you justify it by saying you're looking at other living options for her and this is temporary.

4. Medical.  I like how someone else phrased it - "the doctor says they need to do more tests."  All the appointments are a huge pain but you have to start someplace.

5. This should probably be number 1. Buy a paper journal to keep track of the stuff that wakes you up at night. Also get a project manager app for your phone and computer, even if it's just Trello or something for making lists. Take notes during every phone call. Organize your file cabinet. Do it now before things get any ccrazier.

breathe.

 

 


ZackFootInMouth
Posted: Saturday, August 6, 2022 8:27 PM
Joined: 8/5/2022
Posts: 36


Iris L. wrote:

Read about anosognosia, and you will understand why you need to take charge now.  How is she eating? Is she cooking on the stove?  You need to dementia-proof the house.

 

Iris L.

I'm not sure what a dementia-proof house looks like. As for eating, she barely eats at of this month. I used to be able to make large containers and she would serve herself, reheating them. Then I had to make individual portions, I think that was this year. Now she will only eat fruits and vegetables when I feed her, and only in small doses (large portions seem... threatening). She can still boil water, and frequently does so since she only wants "fresh" water. She does not like meat, but will eat hard boiled eggs without fuss and on her own. She rubber bands grazing on snack foods. She's also lost two fillings as of (dammit) April and she is adamant she doesn't need to go to a dentist (at this point I would have to find one that specializes in elder care over neighborhood ones since she also won't travel to new locations) while simultaneously regretting having difficulty chewing.

ZackFootInMouth
Posted: Saturday, August 6, 2022 8:35 PM
Joined: 8/5/2022
Posts: 36


HollyBerry wrote:

If I had to make a list for you, it might look like this:

 

1. Finances. Pile every piece of paper in a laundry basket and sort it out. Put the bills on autopay. Make the appointment with the lawyer. Talk to your siblings.

2. Safety. Under the guise of "helping," make sure you and others can get into the house whether she wants you to, or not. Tell her you're helping her keep the intruders out, if that helps.

3. Assistance. You both need it. Meals on wheels? Housekeeping help? Yard work? Don't try to do it all yourself, even if you justify it by saying you're looking at other living options for her and this is temporary.

4. Medical.  I like how someone else phrased it - "the doctor says they need to do more tests."  All the appointments are a huge pain but you have to start someplace.

5. This should probably be number 1. Buy a paper journal to keep track of the stuff that wakes you up at night. Also get a project manager app for your phone and computer, even if it's just Trello or something for making lists. Take notes during every phone call. Organize your file cabinet. Do it now before things get any ccrazier.

breathe.

 

 

Breathing comes and goes.
Lawyers are a thing I could use help with. A friend of mine specializes in insurance law, and I've been leaning on them for advice (and acknowledge his lamentations that they can't help me in this field).
The paper journal is something I had her do herself, with spotty success. I just wanted a food journal, but every now and again she'll rip everything up and flush it down the toilet like they were state secrets. I've gotten a local video blog going off an old camera and a series of sdcards; a lot of it feels like reruns: "happy reminiscing in the mornings, rampant paranoia at sundown, and 50/50 mood whiplash every four hours". I know the advice is "lather rinse repeat", so this is just a routine to keep up with at this point. I do/don't want to know what crazier looks like?

ZackFootInMouth
Posted: Saturday, August 6, 2022 8:44 PM
Joined: 8/5/2022
Posts: 36


Also, why is there an aversion to bathing?

Sitting in the sink and ladling water over your body is the same as sitting in a bathtub and using a shower spray isn't it?


Victoria2020
Posted: Saturday, August 6, 2022 8:55 PM
Joined: 9/21/2017
Posts: 1494


She really shouldn't be heating things unsupervised, dementia "proof" means items that can harm are put away AND the patient has   supervision as needed.

Lists etc really don't serve any purpose -- she can't understand or remember what she is ,has or should do.

Have you just sat in her place for a long time, maybe even stayed for a night or two in a row to see how she functions/doesn't?

She can't "fix" herself. Her situation just needs to be evaluated ,she won't get better , can she stay where she is with caregivers part time or afford full time or need placement? A lawyer in the proper field is needed to be sure you have all options. They can probably  also suggest a case manager to evaluate where she is in the disease process and make suggestions about future care.

What you don't want is to wait and have a car accident, if she's still driving, or burn the house down.


ZackFootInMouth
Posted: Monday, August 8, 2022 11:01 AM
Joined: 8/5/2022
Posts: 36


Victoria2020 wrote:

She really shouldn't be heating things unsupervised, dementia "proof" means items that can harm are put away AND the patient has   supervision as needed.

Lists etc really don't serve any purpose -- she can't understand or remember what she is ,has or should do.

Have you just sat in her place for a long time, maybe even stayed for a night or two in a row to see how she functions/doesn't?

She can't "fix" herself. Her situation just needs to be evaluated ,she won't get better , can she stay where she is with caregivers part time or afford full time or need placement? A lawyer in the proper field is needed to be sure you have all options. They can probably  also suggest a case manager to evaluate where she is in the disease process and make suggestions about future care.

What you don't want is to wait and have a car accident, if she's still driving, or burn the house down.

I'm making an appointment with a lawyer from NELF.org (about five years too late). I've been living with her the past three years now, taking less work so I can "big brother" her (spying really, but at times she does call me by her brother's name).

I always thought I was being hyperbolic when I worry she would burn her house down. 

A small victory, though it is odd to call it that: I've gotten her to tromp around less at night by sleeping in "her spot" on the floor. She wakes up at 3am, sees I'm there, maybe does a circle or two up and down the stairs, then goes back to her own bed.

Iris L.
Posted: Monday, August 8, 2022 2:25 PM
Joined: 12/15/2011
Posts: 18248


ZackFootInMouth wrote:

   I've been living with her the past three years now, taking less work so I can "big brother" her (spying really, but at times she does call me by her brother's name).

I always thought I was being hyperbolic when I worry she would burn her house down. 

 

 

 

Zack, what you call spying actually is the supervision that your LO needs.

 

I don’t know what you mean by hyperbolic.  If it means becoming proactive and taking steps before a crisis, then yes, you should be hyperbolic.  You need to take the reins and manage.  The alz.org website has a good section on how to dementia-proof a home.  It is similar to toddler proofing, although we don’t refer to PWDs as toddlers.  Did you read about anosognosia?  

 

Iris

 


May flowers
Posted: Monday, August 8, 2022 3:03 PM
Joined: 4/9/2021
Posts: 716


I don’t have much to add but to say that I am a super organized person, but dementia will turn that upside down. Plan for and take over what you can now, but as for behaviors, they will throw you for a loop day after day. 

My hospice nurse and I “joke” that “dementia is like a box of chocolates…” (Forest Gump)


ZackFootInMouth
Posted: Wednesday, August 10, 2022 3:01 PM
Joined: 8/5/2022
Posts: 36


Iris L. wrote:
I don’t know what you mean by hyperbolic.  If it means becoming proactive and taking steps before a crisis, then yes, you should be hyperbolic.  You need to take the reins and manage.  The alz.org website has a good section on how to dementia-proof a home.  It is similar to toddler proofing, although we don’t refer to PWDs as toddlers.  Did you read about anosognosia?  

 

Iris


Hyperbolic... As in exaggeration that I should be worried she would actually burn down the house. (I did come back to several blackened pots. So after that the fear was very much real.) But at times I do feel like I'm a big brother, a parent, and at times a zoo keeper.

It's 3 o'clock so once again I'm spinning the wheel on how the mood swing goes. Today it was randomly picking up a phone and calling a random doctor's number that was lying nearby and ranting she was lonely, asking for someone to live here, asking for her brother, asking for her mother, asking for a smoke (she's never smoked)... It was very confusing for everyone. She does have an appointment with said doctor, so the receptionist was thoroughly confused when she was given the patient information by the patient and then had to hear all those requests. 

Anosognosia I expect is just going to be denial and contradiction when trying to convince her to do anything. It's not like there's a direct solution, but simply powering through or waiting it out?

Crap this is a big list

https://www.nia.nih.gov/health/home-safety-checklist-alzheimers-disease

 https://www.alz.org/help-support/caregiving/safety/home-safety


ZackFootInMouth
Posted: Wednesday, August 10, 2022 3:03 PM
Joined: 8/5/2022
Posts: 36


May flowers wrote:

I don’t have much to add but to say that I am a super organized person, but dementia will turn that upside down. Plan for and take over what you can now, but as for behaviors, they will throw you for a loop day after day. 

My hospice nurse and I “joke” that “dementia is like a box of chocolates…” (Forest Gump)

Ah ha ha. Yeah. I've got tables that are now shelves, beds that are now laundry baskets, and my bed is now the floor. If I can even afford a live-in assistant, I have no idea where they'll fit (as in space wise) in whatever this home has become.

Iris L.
Posted: Wednesday, August 10, 2022 8:34 PM
Joined: 12/15/2011
Posts: 18248


ZackFootInMouth wrote:
 

Hyperbolic... As in exaggeration that I should be worried she would actually burn down the house. (I did come back to several blackened pots. So after that the fear was very much real.) 

 

 

This is your sign that she should not be using the stove unsupervised.  This is not an exaggeration, this should be a real fear of burning down the house. 

 

 

 

It's 3 o'clock so once again I'm spinning the wheel on how the mood swing goes.

 

Zack, you have to develop the mindset that your mom is struggling to function with brain damage.  What happens each day may be unpredictable, but the overall progression of decline in function is predictable.  You have to read a lot so you can be prepared to get ahead of some behaviors and challenges.

 

Anosognosia I expect is just going to be denial and contradiction when trying to convince her to do anything. It's not like there's a direct solution, but simply powering through or waiting it out?

 

 

Anosognosia is not denial, it is lack of awareness.  You cannot wait it out because it is a characteristic of Alzheimer's.  You have to learn work-arounds.

 

Bing 

Crap this is a big list

https://www.nia.nih.gov/health/home-safety-checklist-alzheimers-disease

 https://www.alz.org/help-support/caregiving/safety/home-safety

Thanks for the sites.  There is a lot to do, but all steps can help.


jfkoc
Posted: Thursday, August 11, 2022 9:50 AM
Joined: 12/4/2011
Posts: 21025


Reading here can be depressing but you are dealing with a disease that can be depressing and that is the bottom eline.

1. Medical: You must read and understand about the diagnosis process. Your mother has not been diagnosed. Therefore ther is not much point to giving her meds which by the way some Drs say are useless and many say do nothing. There is a lot you can google. Please do not second guess your mother's condition.

2. Legal; You mustThe law is specialized. You wouldnot go to  pediatrition for advice. So not think that an inssurance lawyer can help you. My husband, who was a lawyer would give no advice outside of his area. You need a certified lawyer  to set up all legal and health matters...trusts, wills, DPOP, Living Will, health directive. These matters are time sensitive so get it done before it is too late.

3. Education; While this is #1 for support and situational situations, you must enroll in dementia  101. You need to learn that what you may think is reasonable is now impossible. If you take on the responsibilty of taking care of your mother you simply need to know how to do the job. Not learning is going to make your journey many times harder.

So I have given you three tasks.  To do them is plan A. There is no plan B or C or D but there is always the option of not taking on the responsibility. Your choice.

Everything others have written is important to incorporate/pay attention to.

That said, we will always be here to listen and to share so you do not have to be alone as you go forward. 



 

 


ZackFootInMouth
Posted: Wednesday, August 17, 2022 3:33 PM
Joined: 8/5/2022
Posts: 36


jfkoc wrote:
Reading here can be depressing but you are dealing with a disease that can be depressing and that is the bottom eline.
 

1. Medical: You must read and understand about the diagnosis process. Your mother has not been diagnosed. Therefore ther is not much point to giving her meds which by the way some Drs say are useless and many say do nothing. There is a lot you can google. Please do not second guess your mother's condition.

2. Legal; You mustThe law is specialized. You wouldnot go to  pediatrition for advice. So not think that an inssurance lawyer can help you. My husband, who was a lawyer would give no advice outside of his area. You need a certified lawyer  to set up all legal and health matters...trusts, wills, DPOP, Living Will, health directive. These matters are time sensitive so get it done before it is too late.

3. Education; While this is #1 for support and situational situations, you must enroll in dementia  101. You need to learn that what you may think is reasonable is now impossible. If you take on the responsibilty of taking care of your mother you simply need to know how to do the job. Not learning is going to make your journey many times harder.

So I have given you three tasks.  To do them is plan A. There is no plan B or C or D but there is always the option of not taking on the responsibility. Your choice.

Everything others have written is important to incorporate/pay attention to.

That said, we will always be here to listen and to share so you do not have to be alone as you go forward. 



 

 

I'm trying to schedule a personal home aid assessment. The paperwork from the CELA is still in transit but I'm worried about letting someone into the house for the diagnosis. The last time I attempted this was to get a visiting notary, but my mother was adamant of not letting anyone inside. This has not been consistent as I've seen her usher the mailman inside to show them "she was living well" as if they were a doctor (her words were cognizant that they were a delivery worker, but she would show how she was taking her pills and sleeping like she were performing for a doctor).
Getting her a clean area and letting her do what she wants is very conflicting; like having cake and eating it too. When the space is clean and organized and she can find things, she wants to move everything around. She will take old coats from the hanger, put them in laundry bags, and leave them on her bed. When she's in the day, she'll turn on the lights and then take a nap. When it's night she'll turn them off and sit upright.
Currently she wants to leave the house and go to "a safe place" away from "the neighbors". The only reason she's sitting down and eating is because I'm dressed to accompany her and she won't leave the house "by itself".
I get the tricks are very similar to taking care of a colic child. One that is very forgetful. And jumpy. And rinse. And repeat. 
I would really like to have someone she recognizes and can talk to that wasn't just me. If just so that there was someone to reassure me every hour that this is how it's supposed to go.
I should find her Will. I remember a family lawyer drew it up years ago. She says they didn't. It's not in my inbox or my suitcase or my lockbox. And I'm doubting if I have a faulty memory.
But the immediate goal is to now make sure she doesn't wander herself downtown (or onto someone's patio) in the middle of the night. Then assure her she's going back to a doctor whose address she knows (it's next to her general practitioner and there's paperwork she was there four months ago... Even I forgot that part, and I had to walk there taking pictures before realizing I had done this four months ago too.)
Lather rinse repeat!

ZackFootInMouth
Posted: Wednesday, August 17, 2022 3:50 PM
Joined: 8/5/2022
Posts: 36


She's panicking at the thought of going to a "new" doctor. That's across the hall from her general practitioner. That she's been to at least once. That's still 48 hours away. The last 24 hours was the longest I've seen her muttering non-stop. She went into deep sleep for four hours.

My mother doesn't like reading, watching TV, playing games, or talking to people. Talking at people she can still do. I feel a little odd channel surfing to find someone she can yell at (or checking the mail in my underwear to force her to focus on my stupidity). I'm open to additional suggestions.


Fairyland
Posted: Wednesday, August 17, 2022 8:38 PM
Joined: 5/5/2021
Posts: 181


If you can recall or guess who the family law firm was, they probably have copies of the will etc. in their possession. Once I figured that out for us, it made life a lot easier in our case and I ended up using that lawyer who knew all about the background and my family.
Fairyland
Posted: Wednesday, August 17, 2022 8:44 PM
Joined: 5/5/2021
Posts: 181


As for the panicking about going to a new doctor, etc. you need to work on your acting skills and the art of the fiblet.

Stop telling her about these stressful things in advance. If you must, Tell her she is getting a free checkup, or that it is required for her age group for Medicare- whatever it takes. Or even do what I now do and don’t tell her anything, until the moment you need to start getting her to leave the house (however long that is likely to take). You are now going out to lunch, or for ice cream, oh sorry you forgot to mention it- and suddenly in the way, you just need to stop in at the doctors office- oh could she come in with you please, it might be a long wait in the car, or you forgot you need her help to fill in some forms… yadda yadda. You do the visit then off to lunch/ice cream/ the store.

I never tell my mom about what is going to happen in the future- it just stresses her out and she loses sleep etc then still forgets. It now entirely my responsibility and I keep my own counsel about the calendar.


ZackFootInMouth
Posted: Thursday, August 18, 2022 6:26 AM
Joined: 8/5/2022
Posts: 36


Fairyland wrote:

As for the panicking about going to a new doctor, etc. you need to work on your acting skills and the art of the fiblet.

Stop telling her about these stressful things in advance. If you must, Tell her she is getting a free checkup, or that it is required for her age group for Medicare- whatever it takes. Or even do what I now do and don’t tell her anything, until the moment you need to start getting her to leave the house (however long that is likely to take). You are now going out to lunch, or for ice cream, oh sorry you forgot to mention it- and suddenly in the way, you just need to stop in at the doctors office- oh could she come in with you please, it might be a long wait in the car, or you forgot you need her help to fill in some forms… yadda yadda. You do the visit then off to lunch/ice cream/ the store.

I never tell my mom about what is going to happen in the future- it just stresses her out and she loses sleep etc then still forgets. It now entirely my responsibility and I keep my own counsel about the calendar.

I was a terrible liar. It's one of the things my mom drove me away from. But I see the necessity of it here.
I gave her 72 hours notice. It wasn't great. Her yelling at me all night when I told her she had an appointment she didn't remember making was fun. I thought she calmed down by day 2. She was upset but she kept saying she was ready.
Boy was she ready.
It's the day of, crack of dawn, hours until her appointment at noon that I planned to sneak after her ("and leave the house BY ITSELF?!" I can hear her yell on the bus) and make sure she got there.
And now I'm making a 911 call to file a missing persons report.
What are plans to someone who rolls the dice to decide their actions?
There's a good chance she knows enough to come back home, likely with milk and eggs that I already bought three days ago, and probably without visiting the doctor. Or she'll be at the general practitioner's banging on the elevator doors because no one is open at 6. Or she might even be (super) early to the specialist's right next door in the "new" address she couldn't find.
I need to give her enough freedom to move about, but also turn the living room into a prison. It was the most central place for her: there's a bed there, Eastern facing windows, four routes that go to the kitchen, office space, and stairs going up and down; the office has the front door, there's a back door in the kitchen, and bathrooms at the end of either stairs. Does this mean I need to install gates for the stairs too? She's still smart enough to find keys, toss out the GPS devices, has got tools around her neck to fix/break things, and she's still able to keep the facade of being even-keeled in public. Do I need to buy an Air tag and sew that into her backpack (the rare times she takes it off)? It should be small enough she won't notice the weight difference.

May flowers
Posted: Thursday, August 18, 2022 6:59 AM
Joined: 4/9/2021
Posts: 716


Scary - I hope you find her soon. Check her usual places but don’t assume she made it there, LOs can get lost during a walk they had made 1000s of times, it happened to us. With dementia, it is more than just memory that is gone, the ability to logically work through how to handle being lost (flagging down a police officer, calling you, asking for directions, etc) is also compromised.

There is no point in giving a LO notice - even if they could remember it they cannot process it rationally. Their brain is broken. We gave my FIL an hours notice of appt (just enough time to get ready). 

I would have alarms at every door and window, inside slide bolts on the top of every door, and possibly a floor alarm mat that would alert you if she is getting out of bed. We used one to alert us when our LO started down the hallway, which gave us warning if he approached the stairs (but did not wake us when he was using the bathroom or fiddling around in his room which was dementia-proofed). The small tracker in her backpack is a good idea. 

I would not just hide the keys, but lock them away. Credit/debit cards too. You would be amazed at how many people here have had LOs ruined financially because they do not have good judgment. Same for driving, if she is driving, it is not just about remembering how to drive and get places, it is also about reaction time and judgment. 

 


ZackFootInMouth
Posted: Thursday, August 18, 2022 9:55 AM
Joined: 8/5/2022
Posts: 36


It was an adventure. She did manage to make her appointment, showing up 'just' two hours ahead. I should wonder what she was doing for the five hours from when she likely got off the bus since none of the stores (save for breakfast places that she always complains are cesspools) would be open until now.

I want to go over and pick her up when the appointment finishes, but I also know that it's going to anger her (assuming she's not asleep). And she's not going to get into a car by herself if I send someone over (or at least not likely). And then there are the police who are coming over to talk to me. Such a busy day. All this likely because I had a stomach ache at 3 am.


Victoria2020
Posted: Thursday, August 18, 2022 9:59 PM
Joined: 9/21/2017
Posts: 1494


Hi Zack

 I hope she's back safe by now.

You know I was looking at your thread's title: "How to organize myself around a disorganized LO?" while pondering the recent adventures and thought, shouldn't the situation  be the opposite to be successful?

Trying to fit yourself into the world "managed" by a decaying mind, with a shall we say strong quirky personality, is a place few can survive intact. And it isn't a world that is safe for either of you.

 I hope you can reach out and explore care options etc . for her . It may end up being best if her care is managed by an outside entity. No shade on you - dementia is a place that is horribly sad to behold, especially when it is a family member. Hope you can get into the lawyer soon to explore options.

 I wish you a good night's sleep.


ZackFootInMouth
Posted: Friday, August 19, 2022 5:06 PM
Joined: 8/5/2022
Posts: 36


Victoria2020 wrote:

You know I was looking at your thread's title: "How to organize myself around a disorganized LO?" while pondering the recent adventures and thought, shouldn't the situation  be the opposite to be successful?

Trying to fit yourself into the world "managed" by a decaying mind, with a shall we say strong quirky personality, is a place few can survive intact. And it isn't a world that is safe for either of you.

 I hope you can reach out and explore care options etc . for her . It may end up being best if her care is managed by an outside entity. No shade on you - dementia is a place that is horribly sad to behold, especially when it is a family member. Hope you can get into the lawyer soon to explore options.

 I wish you a good night's sleep.

Oh yeah. I'm expecting to be pinballed. Taking control, establishing limits and zones, makes me feel like a prison architect and warden and guard. Doing any of the three feels... Wrong. Like I'm locking her up. But she's not able to use the TV, has mostly forgotten how to use the microwave, and is at times forgetting how to dial a phone. She's no longer stumbling or careening side to side when she walks, but her eyes are getting really sensitive to light that the television has to be set to the 2nd to dimmest settings or else she just sees white.

 

I need to be more... Adversarial? Most of the times I'm shadowing her and cleaning up the clutter in her blind spots (when she leaves a room to stare and gesture to things outside, talk to the people on TV, etc). I've lost being able to access the 2nd floor (it's all barricaded doors of rooms filled with clothes in trash bags; or something else, but they're all bagged and I've lost track).

Sometimes I feel like I'm the one with cognitive issues, wondering where I put X last week/last month (it's in a bag somewhere)


ZackFootInMouth
Posted: Friday, August 19, 2022 5:49 PM
Joined: 8/5/2022
Posts: 36


 I'm hoping to find her a hobby. She doesn't color, read, write, draw, listen to music, walk, talk to people (not entirely true, but what she says and who she says it to is erratic)... She is very voracious about finding laundry to do (I'm buying extra soap and detergent so she can wash socks regularly), cleaning dishes (not very thoroughly), and taking out the garbage (four times a week; pick up happens twice). But these are daily tasks, not hobbies she can focus on. 

I feel like a parent who throws their kids at a screen, but yeah, it would be nice to have a climate controlled library to drop her off into for a few hours so I can vacuum. (I'm not vacuuming entirely for the sake of organizing; since I'm sleeping on the floor now, I'm hacking up dust balls more often.)


Fairyland
Posted: Saturday, August 20, 2022 7:23 AM
Joined: 5/5/2021
Posts: 181


My mom spent lots of time rearranging her cupboards, cleaning the sink, sweeping the floor, the things she has done all her life. Chores but have some structure to empty days. But she got very frustrated trying to prepare meals or sort out old magazines. After going to assisted living she spent a lot of time sitting around and refusing to do anything much, but she did go down for meals 3 times a day and gradually made friends and got drawn into some things. Mainly walking and talking with a very determined lady who takes her hand, and being brought by staff to exercise and happy hour music. I don’t think new hobbies are really on the cards at this stage.

She was a brilliant artist but now even organising coloured pencils upsets and frustrates her, she doesn’t have the executive function to make any art. She has enjoyed the occasional class they have organised everything, (and they sent me pics of the fantastic results), but doesn’t remember doing it!

I’m sorry she has lost her former life but I think she is happier really in the moment, even though she doesn’t realise it.


ZackFootInMouth
Posted: Wednesday, August 24, 2022 11:59 AM
Joined: 8/5/2022
Posts: 36


Happy is a strange term these days. She's... She looks bipolar with mood swings from inconsolable grief not being able to remember details, unbridled rage for perceived slights, to upbeat anticipation for meals.

The past two days, my mom put her foot down and didn't want to be indoors because the demonic neighbors are giving her... Liver spots. She went out and took... Walks. It beats staying up until 4am standing on the porch with a flashlight, but there's no rhyme or reason for her walks, I don't know exactly where she's going (it's usually to take the bus downtown or walk to the schoolyard; I do my best to trail her, but I have to leave when she's out of sight as she keeps insisting "the house to have company"). These jaunts last an hour or six, and while her mind isn't all there, it still knows how to get back (I just have to be indoors to jiggle the lock open).

I question if this is a sign she needs new scenery... But I don't trust her to get anywhere new by herself (think homing pigeon) and she won't want to be escorted (unless I can coordinate a friend to housesit) and she won't take a cab.


ZackFootInMouth
Posted: Monday, August 29, 2022 2:20 AM
Joined: 8/5/2022
Posts: 36


So it's been almost a week of 'not terrible behavior'. Sure twice she's snuck into my go bag and started eating my antacids like they were candy, nevermind they taste of chalk. Four nights she doted on me like I was a feverish child (because it's summer and I sweat you see). But that meant I had decent sleep most nights.

This 3 am I slept lightly, hearing a bird tap my window.

Turns out it was my mother who had taken loose screws from the cupboard and started hammering them in the windows with her shoe. Don't look for logic. She undid the screws with her fingers, put them on the glass pane, and then started hammering them into the glass with a soft shoe thinking it would secure the window and prevent the demonic neighbors from opening the window this time and slipping in to give her more liver spots.

 


Iris L.
Posted: Monday, August 29, 2022 5:32 PM
Joined: 12/15/2011
Posts: 18248


ZackFootInMouth wrote:

So it's been almost a week of 'not terrible behavior'. Sure twice she's snuck into my go bag and started eating my antacids like they were candy, nevermind they taste of chalk. 

 

This is a sign that you need to put away ALL of your medications and non-food items that could be eaten.  This includes liquids, such as bleach or ammonia, that could be drunk as a beverage.  The taste buds become altered, so you cannot rely on a bad taste to defer them.

Iris L

Quilting brings calm
Posted: Wednesday, August 31, 2022 5:16 PM
Joined: 10/16/2020
Posts: 1188


Zach … a demented person went  to a doctor appointment by herself on a bus?   Do you have any idea what happened at the doctors office?   My mom can  put on an act like a professional actor at the doctor’s office.  But she can’t remember  what was discussed 5  minutes later. Without me there to tell the doctor the truth, my mom wouldn’t get the care she needs.  

Write the doctor a letter- drop it off or email it or sign up as her for their patient portal.  Tell the doctor your concerns and start working with them.   Your mom is operating on the level of a small child.  Would you send a small child on the bus to a doctor appointment by themselves?

It appears to me that you are in denial.  None of the various anecdotes that you’ve included in your posts describe someone that should be left alone at all.  She actually sounds as if she needs 24/7 supervision from someone well versed  in taking care of a dementia  patient. I think you are indeed lucky she hasn’t burned down the house, flooded the bathroom,  or gotten attacked on a bus.  

The time  for her to learn new hobbies is past.  She isn’t at a level where she can learn new things.  

I also think you care deeply about her.  my suggestion is to buy a copy of the book the 36 hour day and look up an article on the internet titled ‘ understanding the dementia experience’.