What are the things you wish you'd done (or are glad you actually did) when you first thought things might be off, but before any diagnosis of dementia. Or maybe even before any specific suspicion?
Thankfully, I'm not in this position, but a friend thought the collective experience of this forum might give them some insight they haven't gotten from reading articles/websites on the topic of dementia. There are warning signs, but not significant disability yet, and no way to tell how fast things might progress.
My Moms Medical POA listed what she wanted and did not want so no need for a living will. People have mentioned having a DNR order filed with doctors and facilities.
The more you do, makes it so much easier on those who will be responsible for you later.
Often, when someone has severe dementia and is suffering, the family does take over the decision making regarding heroic measures such as CPR and ventilators, no matter what any directives say which were made when the patient was rational.
As long as family and directives BOTH insist on heroic measures they will be taken. I, as a lifelong RN only wish that those families could stand witness as the CPR crunches those brittle bones--could feel it and hear it. I think it would change a whole lot of thinking, especially given the small numbers of people statistically, that survive to live a quality life after CPR.
As to MAiD, I am so thankful for it. Having now my second bout of cancer, it will all set up and well understood between myself, my family, my directives and my hospital and doctor that when/if I get the 6 month prognosis I will take that lovely cocktail. Saves some medicare money, saves some family at the bedside trauma, and I personally am SUCH a lover of sleep. I will happily go to what my father called "the last long nap".
We are all different. We all should have the right of our own choics. As an atheist no amount of churchy stuff figures in my thinking. Someone sends me to some hell I guess, as with life, I will have--hee hee--to make the best of it.
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.
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.
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!).
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.
Also, of course get a POA in order (durable medical and financial, too)...not a springing one, unless your state requires that - more hoops to jump through in order to start using it.
Yes, having the POA, Will/Trust (Trust better if there are lots of assets) and an Advanced Directive, Health Agent named, etc. The "gap" is when the LO w/dementia is in the gray zone area of having cognitive impairment but NOT YET at the point of lacking "capacity" AND they MAY BE MAKING really bad, poor or dangerous decisions.
A "springing POA" allows one to make financial decisions if the person based on what your state law requires lacks some or all capacity (and based on how the POA is drafted/written). A broad POA allows others to make decision even when the LO still has capacity. The problem is a POA does NOT STOP the LO from still doing things financially. This latter situation, actually stopping the LO from making decisions, financial decisions requires a court to find that they "lack capacity" and "need guardianship" whereby another takes over entirely and the LO looses their rights.
In this in-between state, the LO w/dementia can make spending and other decisions that are CLEARLY NOT in their best interest (refusing to go to the doctor, to get medical care, to accepts help/aides or SPEND funds on absurd things).
I am working on best ways (based on my State Law) to figure this out w/my spouse. We have a 10 year age difference. I have said if he passes before me, he is fine with me remarrying BUT OBVIOUSLY he (we) would NOT want to allow the "new spouse" to take the assets (we have worked so hard to accumulate) and blow it all. At this point we have agreed that we want our two adult kids to inherit the corpus of the assets. BUT what if I am cognitively impaired and NOT making good decisions? What would STOP a new spouse from pressuring me/convincing me w/poor cognition to redo the revocable Trust at some future date????
What I have learned is that a "Post Nuptial Agreement" between spouses may work as this is a contract that would spell out how the assets are divided in a signed contract. An irrevocable Trust may be another option.
But there is a "legal gap" IMHO that does appear to be (yet, perhaps some lawyers can create a real pathway here) a clear cut way to deal with those folks w/impairment, making poor decisions but NOT YET actually lacking capacity.
If others have ideas, would love to hear about them. This gray zone is what lots of folks go through as dementia is NOT an automatic = lack capacity; there there are years of this making really bad, perhaps dangerous decisions for which there appears to be no real good legal solution. Thoughts?
In the case of my father, there was a 3-4 year period of cognitive decline before he was diagnosed. He made a lot of financial mistakes and also had a couple of car accidents and made some dreadful decisions — all the opposite of his previous behavior.
Once he was diagnosed, I got letters from the diagnosing neurologist saying that in his professional opinion, my dad should not drive nor should he control his own financial or business affairs. I used this letter to get him off the car insurance, we sold his car, and took the keys. I also used the letter with the DPOA to get him declared an “Incapacitated person” as far as his IRA, checking account, Social Security. I gave him a debit card with a very low balance. He no longer understood cash. He still managed to do things that I hadn’t ever dreamed would cross his or anyone’s mind — like he canceled their Medicare advantage program without telling anyone. I came to find out when taking him to one of his drs.
In terms of protecting your assets in case you die first and worrying he might either blow it all or remarry and give it all to his new wife and her kids and your kids get nothing — consult your attorney or financial advisor about a marital bypass trust. I am not a lawyer but my understanding is that it would prevent that, while also allowing the money to be used for his care.
Good luck.
We as caregivers and family need to know that it is not them it is the disease. This website and ALZ.com helped me immensely through the last two years of my daddys life. Thank you Galileopan for asking this question I pray it helps all that are dealing with this disease.
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.
Again - thanks so much for all the great answers!
Air tags work with newer iPhones and are great to place in a pocket or bag...but could easily be removed or left behind.
I also have seen this great idea of a patch they can wear on their back (probably quickly forgotten and not bothered there): https://www.alzstore.com/alerta-wandering-alarm-patch-p/0902.htm (if the link doesn't work, go to Alzstore dot com and search for "wandering"). They have other helpful items on that website, as well.
Keep in mind that dementias are all so different and each person is different, so it's difficult to predict the exact issues she'll face. But wandering is one. Another is, how tied to his cell phone is he? Does he have passwords that auto-fill and websites where he can easily buy things (which may become an obsession or accidental catastrophe from time to time)? Will he text back to scammers or answer scam calls and then give out credit card numbers / bank routing numbers? My mom used to do all these things. It was infuriating and so frustrating, until she finally got to the point of either not realizing we hadn't brought out her phone for the day (this was when she was having full help with showering, dressing, and being served meals)...or she just forgot how to navigate the websites anymore...or she finally forgot her credit card number (previously she had it memorized for many years!!!). So, taking control of his phone may be necessary - reset passwords on websites and link them to a new email address you establish. IF he doesn't have a credit card number memorized, you could request a new card (say it was lost) and then keep it locked up or in YOUR purse (if he won't go looking for it there). And you can select a setting to only let "known" numbers from his contact list to go through as calls/texts...others should go straight to voicemail. But that only works if he doesn't get into the settings and change them back. But there are also "parental" settings for some plans where you can completely lock down the phone, which will work even better.
Then it's not YOU taking away their vehicle, but the state. There already enough conflicts and challenges to bear in this situation so this is one you can take off your already heavy load.
The mind is very adaptable. You make judgements all the time based on previous experiences which if your mind was not damaged, would take into account all the little things that happen. For instance, we think someone might have stolen something or we misplaced something, if that something is not where we remember where we put it. The main point in this statement: It is not where we we remember it to be. With a broken brain, we won't remember everything that has happened...we may have given away the item in question. You need someone who you can trust who can tell you the truth about the world that your mind is not aware of.
The other main reason for this person is because they become your advocate in personal life as well as medical. You need to ask them and trust their judgement if you owe someone money, buy those gift cards because someone called you about starving people, or whether you really need to take that pill, or whether that person on the phone really is your grandson, asking to get out of jail (e.g. grandparent scam) and whether you should stop driving. You need to develop that relationship to unconditional trust.
Its tough...you need to find someone who has the same financial mentality, someone who doesn't mind being on nearly 24 x 7 call, someone who you can trust when they say, it is time to put you into memory care, or yes, you have to take these pills and that liquid (or solid) came from your body (do NOT touch it or smear it).
There is no timeline for Alzheimer's...so you need to make plans to find this (or these) advocates.
Not an easy decision....
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.
I’m not kidding - not one week ago I was crying in my DH’s PCP office about this very thing. It’s not just the what-to-do we need, it’s the what-order-to-do-it-in! And it needs to be all in one place with a numbered checklist, followed by detailed notes on how and who and when. It also needs to be specific to whom the family member is caring for, spouse, parent or sibling, as the requirements are different.
This forum and the articles are helpful in a limited way, if, as a caregiver, you have the wherewithal and time to sift through and organize, but I guarantee you, at some point in this ordeal that wherewithal is going to fly right out the window.
By some miracle I got most of it right, some with help with the forum, some was plain dumb-luck. Yes, I did see an elder attorney pretty early on but nothing would have been as helpful as a doctor or attorney offering me a handbook at the very first sign of my husband’s cognitive decline.