What do you wish you'd done (or are glad you did) before an Alzheimer's diagnosis?

I started keeping a diary every time mom did something or said something that was weird, off, that made me think there was something like dementia/Alzheimers occurring. It went on for a few years as things went downhill. Then when I needed to go to court to apply for guardianship, I had all of that to give the judge. Note: it was approved
I would definitely recommend that to anyone. Her sister is showing signs. I told my cousin to do it and to write down anything that has occurred already.

Get legal paperwork in place and signed, because once diagnosed with dementia, a person is no longer legally able to sign on their own behalf. I mean will, health care proxy, and durable power of attorney. You can phrase it like “in case anything should ever happen” even though you are pretty sure it IS happening.

Also, get familiar with ALL their financial accounts, download and/or print out monthly statements going back a year. Start monitoring their accounts now for mismanagement. Giving vast sums away, gambling, etc.

Remove or lock up any weapons.

Get copies of their last 2-3 tax returns. Acquaint yourself with all sources of income— social security, pensions, etc. And any health or other insurance. Get a copy of their driver license and write down their social security number and date of birth.

I speak from experience.

Assign a pre-Social Security representative payee. And if a Veteran, fill in the third party paperwork do that administrative help can be utilized when necessary. Many Federal agencies do not recognize state based POA.

As other comments emphasize, you need your "ducks in order" on all legal aspects of the person's life as early as possible. My sister was "off" and forced to take FMLA from her employer. I was fortunate that my older sister did not object to me taking charge. I immediately had our attorney draft (1) a power of attorney for both medical and financial decisionmaking; and (2) a will and revocable trust, which my sister signed and we had notarized. It's important to get this done before an official diagnosis because you don't want anyone challenging the documents' validity by saying that the person wasn't of "sound mind." I was able to then contact her employer directly to work out my sister's unused vacation time and FMLA period, which guaranteed her medical insurance for a number of months. Eventually, she went on COBRA which was quite pricey, but she couldn't be without medical coverage. I then pursued any short- and long-term disability policies for which my sister was eligible. This included social security LTD, which requires lots of paperwork. Having everything filed meant that when my sister did get the diagnosis of AD, she was immediately approved for both private LTD and social security LTD, backdated to her last day of work. I believe we had to wait 12 months after she qualified for SS disability to be eligible for Medicare (she was only 56 when she was diagnosed). The government does not recognize a POA; it requires paperwork to designate you as a "personal representative," which entails certain legal obligations. Finally, with respect to her employer, I asked about her group life insurance coverage and how to convert it to a private policy. Sadly, this turned out to be a great deal because very early AD patients typically don't live very long.

At the same time, I sent the financial POA to my sister's credit card company and bank, both of which added me as a joint owner; everything remained under her social security # so I had no tax liability. [I then immediately imposed a dollar limit for any single transaction/withdrawal.] I contacted her retirement plan to be added as the primary contact person and get details for withdrawing funds should she need them (no penalty if withdrawn due to LT illness). I also changed the address for my sister's mail to mine, to make sure that no bills or notifications were ignored. My one partial failure was not obtaining all of her user names and passwords for her on-line accounts.

My sister finally moved in with me (she lived in N. Virginia and I live in St. Louis) months later. Before she did, I booked appointments with my internist and two AD specialists - one in neurology and the other in geriatric psychiatry. [Even with this powerhouse team, it took them from early February until mid-November to diagnose AD.] I also got all of the vet records for her dog, who came with her. When it became clear months later that she would never go home and live alone, we proceeded to clean out her house and sell it. My sisters and nieces participated in the clean out, claiming for themselves the items they wanted. By doing it together, we had no squabbling at all!

I know this is a long response, but I am a Type A personality and was well-organized in handling my sister's affairs. Still, EVEN FOR ME, there were a lot of hoops to jump through and lots of uncooperative, unsympathetic people that I had to plow through. This is why the earlier you begin, the greater the likelihood that you will remain sane!

BUT the most important work to do at the very start of this journey is get buy-in from other family members as to who the primary decisionmaker will be. I was very fortunate to have a sister who handed it over 100% to me; much as I had handed 100% over to her when she managed our parents' last years. By agreeing in advance, there is less possibility of AD destroying not only your loved one, but your family as well. And that happens a lot more often than people might think.

My parents had all of their documents in place - a "death binder" from their lawyer with estate information and all important documents in a safe. Unfortunately, my dad let my mom handle all of these docs and she is the one that got Alzheimers. My dad refused to believe that my mom had a "broken brain" and continued to allow her to handle the important docs. When dad had a medical emergency and we finally moved them to Assisted Living, we tried to locate the documents and they were not in the "death binder", but strewn around the house, in various random locations (inside books, photo albums, such random places).
So...my point is - it's not enough to ensure they have these docs, but they need to be secured - i.e. where someone with Alzheimers cannot access them and "reorganize" them. Or maybe copies of all of them to keep in someone else's house?
But I will say that my parents having everything in the trust was of GREAT help! My MIL passed away unexpectedly and not until after she passed, did we learn my FIL has dementia. They did not have any "death docs" prepared and 3 years later, we are still finding stuff (they were hoarders of every piece of paper that ever entered their home - cards, pay stubs, EVERYTHING!).

Regarding power of attorney assignments, there are two features families need to consider. One is that many banks do not accept a POA to grant access to accounts. Ask the individual's bank asap if they accept a POA document or require a form specific to the bank. As others have said, the Social Security Administration and the VA have other requirements to grant someone else access to accounts. The second feature of a POA to remember is that it becomes invalid upon the death of the individual. Once someone passes away, a POA does not allow access to accounts of any sort. Survivors' names must be added to accounts prior to the death. Otherwise, the account is locked until probate is complete.

For the potential caregivers, do not make promises that you have no idea how you may keep. As a person feels their mind and health slipping away, sometimes these promises are asked or even demanded. It may be easy or an obligation to say “I promised to never put them in a nursing home or memory care” however, those words are said at a much easier time when you have no clue what possible horrors are to come. I’m glad I never did this, even though the situation wasn’t dementia it was still vital

I wish I had understood more about how quickly the dementia can progress. My mom's mother had Alzheimer's, but it took years to decline to the "needs a facility" stage. Visits to the neurologist showed that mom's decline was quicker.

I wish I understood how unwilling siblings would be when things became obvious and difficult decisions had to be made. I ended up doing everything myself with zero help from them. Very stressful time.

I wish I understood more details about the state's Medicaid qualifications and process in advance, so I could have had mom better prepared for the transition to a memory care unit in a nursing home.

Besides having your LO create a PoA that is durable, a Advance Healthcare Directive, a POLST and a Last Will, I would include naming a Pre-Need Guardian. Sometimes even with a PoA a person cannot force a resistant elder to do things in their best interests -- like going to the doctor in order to get a diagnosis. Then if guardianship is needed to manage and protect them, it names someone they prefer as their guardian so that the court doesn't have to decide.

Also, I've been reminding my 95-yr old Mom (who lives next door to me) that I will arrange for in-home aids or transition her into a facility if she becomes a danger to herself or others, or I become overwhelmed by her care. We will start with in-home aids and if she resists this she will go into a facility. I even know where she will go already and she's been there to see it.

We were not prepared at all for an early diagnosis of dementia. My mom was in her 60's when things started to look off. We had no previous family members with dementia so it was not on our radar. She had nothing prepared, no documents in place and no extra money.

I wish I had taken some trips with her prior to the diagnosis. I thought we had time. My grandmother (her mom) was still alive, living alone and driving up into her 90's. I thought my mom had another 30 yrs of productive life left and she didn't. She missed out on her granddaughter getting married and having her first great grandchild. She missed out on being with her own mom during the last month of her life. Dementia has robbed my mom and our family from so many things.