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How to organize myself around a disorganized LO?
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.)
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?
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.
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.
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.
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?
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.
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).
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?
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)
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
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 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.
Thanks for the sites. There is a lot to do, but all steps can help.
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.