I scheduled a cognitive assessment appointment. What else should I do?

I am home from my frantic weekend and my mom has a brand new official diagnosis of “major neurocognitive disorder due to Alzheimer’s”. Success!

Here is a surprising wrinkle, her sister (who I’ve probably never mentioned because she’s 2000 miles away and is not involved) wants to bring my mom to her area to put her into memory care. Wow! I actually adore this idea, although it will be a nearly military level amount of planning to pull off. Stay tuned for info on that.

For now I am home having accomplished everything I hoped to including having found the clear winner in mom’s area for memory care facilities.

Wishing you good luck and Godspeed with this whole ordeal, my friend. I had to place my mother in Memory Care from the AL she loved so much and it was very difficult. She didn't believe there was anything wrong with her and kept yelling that the doctor was FULL OF SH**. It always amazes me just how much trouble and anxiety ONE person can cause.

Mom lived in MC for just under 3 yrs, complaining to me the entire time, but was beautifully cared for right up till the end. The line of caregivers and administration at her door to pay their final respects was heartwarming.

Keeping you in my thoughts and prayers as you do what must be done.

One thing that's helped me tremendously as a POA is a single file I can access on all my devices that tracks all account numbers, user names, passwords, etc., for everything: banks, credit cards, social security, income sources, investments, health insurance, medical chart apps.

Plus a section for all the key demographic data: DOB, city/county of birth, marriage date/location, mother/father name inc maiden, SS #, state ID or DL #, medicare #, and ALL military dates/##/details. Go through the process of setting up login.gov and/or ID.me accounts with your mother in the room as they'll randomly ask things like "which of these car models did you own in the 1980s" to weed out ID theft.

Finally, a list of current meds including over-the-counter and nutritional supplements.

Keep them all updated as things change and new accounts get added. Proactively ask any financial or medical accounts how to submit a copy of your POA for their file. Be prepared for anything with a financial agency to require having the account holder on the phone to say "yes you can speak to her" even after they have a POA on file.

Also, I'd take good quality front/back photos of all ID, Medicare and other insurance cards, bank cards -- anything vital in the wallet. I've pulled up those pix countless times and had to upload copies of the IDs on a few occasions.

Finally -- while I'm thinking of wallets -- we just moved my MIL into memory care, and have removed all financial cards/data (including checks) from her purse to avoid the opportunity for loss or theft there.

Good luck to you in the weeks ahead!

I would get her diagnosis in letter form on clinic letterhead and signed by her doctor saying she has impairment sufficient to need the full time management and decision-making of her PoA. I needed this when I sent in my Mom's PoA paperwork and affidavit to her annuity holders, it didn't matter to them that the PoA was durable. Print it out. Make digital copies of everything and name the files accordingly so they are easy to locate.

You won't need a doctor to tell you if she's "completely incompetent" -- you'll be able to tell by dealing with her. The doctors don't "decide" that she can't be left alone. They give you test results, facts, stats, etc. but ultimately they don't decide anything for you since they have no way or desire to enforce it. They can't force you to perform any action -- you already said she's been unable to be at home safely for years. Any action/solution comes with a pricetag and they can't decide that for people.

I would make sure you talk to her doctor discretely about meds for any agitation or anxiety. Docs need to perform an exam in order to prescibe meds for patients.

A facility will interview both you and her to see what level of care she requires. If she wanders then she will surely be in MC. If she can't feed herself or do any hygiene, she will need MC.

Do you think she will go to a facility willingly? Have a plan if she will physically resist this (a therapeutic fib). Facility admins and staff can be in on the fib -- it's not their first rodeo.

Wishing you success in getting your Mom situated!

Since others are mentioning organizational tools, I use a password keeper app for everything. The one I've been using for over a decade is actually "extra strength" because we used it for our business and it cost more money and allows different users different access levels. But it allows me to store images (pdfs, jpegs, etc), and files are already set up as logins, secure info, credit cards, etc. It has a handy search tool if you "tag" each entry, and allows auto-fill when you go into a website, and it can generate strong passwords if you want. It has been invaluable but you don't need anything this complicated -- just something that you can access from either your mobile and any other devices. I don't write anything on paper or keep a file unless I absolutely have to (like original birth and death certficates, marriage and divorce papers, titles, etc). I have a pencil scanner that travels well and is wireless but now they make apps that "scan" to pdfs for phones.

It is essential when you create digital files and folders that you name them in a consistent way so you can find/search them quickly and easily. For files I start with the persons last name, then year (and month if necessary), then abbreviated description "Birth cert". The naming hierarchy goes from broad to narrow.

Sorry, that was a lot of HR nerdiness but its what I did a lot of when we had employees. Compared to my husband, who has a chaotic and inconsistent methodology of filing -- he constantly cannot find what he files, even digitally. Plus he doesn't ever "clear out" anything. If it wasn't for me curating the contents of our password keeper, he'd be utterly lost. Just putting in a plug to learn or keep up with technology -- it's our friend if we allow it to be.

You seem very organized, analytical, and handling this alone, so in case you haven't: prepare to take care of YOU. Do you have a friend or other family member who you can have on speed-dial to just vent to? Make sure you get enough sleep and eat properly, even if you don't want to. Feeding and maintaining YOU helps you think better, deal better with stressful situations, and come up with better ideas.

Also...be kind to yourself. This is a very complex project. You will no doubt forget something. That's ok, just pick up whatever it is when you realize it. Everything no doubt feels very urgent and must do now now now right now, but that's often not the case. Focus on the big things first: having legal framework in place, moving forward on the long-term project of finding a memory care place and doing whatever they need done, making sure (as much as you can) that your mom is safe. Taking care of YOU.

Also, in your binder (if you haven't already), keep some brief notes of what your mom's concerning actions are and when they happen. I know that I started losing track of what happened in what order or when, but my notes were helpful whenever I had to sit there and try to establish with a doctor WHY things were getting worse and what my concerns are. During the assessment, they may ask both you and your mom to fill out an intake assessment, so they can compare them to help determine how reliable the person's assessment of their own situation is. If you've not dealt with the neurologist doing the cognitive assessment before, and if you're not sure you'll have an opportunity to talk to them: write them a letter, and then send that ahead of the visit and/or bring it and ask that the front desk give it to the doctor during the appointment. Keep it concise, but tell them the most important things they need to know: what YOU are seeing, whether/how your mom has become unreliable when asked about her own behavior, and what YOU are hoping to get out of the assessment (e.g., "I'm worried for her safety in her current independent living arrangement, but she does not want to move. I'm hoping this assessment will determine whether she is competent to make her own medical and housing decisions and whether she needs a supervised living situation and/or memory care.") Having a letter/report touching on those points helped me feel like I was covered if my dad tried to check himself out of his facility.

And if your mom is found incompetent...nothing is going to happen right then. It doesn't trigger anything, on its own. It's just a document that you can then keep and use to prove that no matter what she says, someone else should be making decisions on her behalf. From that point on, there's just your personal sense of responsibility to move forward as best you can. I don't even know that I'd describe it as "your legal duty". That would depend on your state laws (look up "filial responsibility laws [your-mom's-state]") - even where there are laws on the books, they're often not enforced because I think most people realize that it's cruel to ask a child to impoverish themselves on behalf of a parent. So, informing yourself about that might ease your worries a bit. For sure there is usually CULTURAL pressure (especially if you're a woman) to support aging family, but not always LEGAL. And, all else fails (you just can't handle her care anymore)...you can contact your mom's Area Council on Aging and ask about making her a ward of the state. There's always a way to do that-not everyone has kids after all.

If you have an elder care lawyer you're working with, maybe have them on speed-dial too, especially when it's time to sign facility contracts. IANAL, but it's always better to sign as your mom's POA rather than just signing your own name on your own behalf: that legally means your MOM is the one paying the bills and protects YOUR assets if she can't cover it.

Good luck. This is hard. Kudos for trying.

She will need a TB test to enter a facility.

Her doctor should be able to deal with this.

Contact Teepa Snow.
She is one of the country's leading experts on dementia.