Alzheimer's caregivers, guardians, and conservators

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
User avatar
Nords
Senior Contributor
Senior Contributor
Posts: 117
Joined: Sat Nov 02, 2013 8:55 pm
Location: Oahu.
Contact:

Re: Alzheimer's caregivers, guardians, and conservators

Post by Nords »

Stavia wrote:Nords, you are a treasure and we greatly appreciate your work.
You're welcome, Stavia!
circular wrote:Thanks so much for including this thread in our forum. I am deep in the caregiver abyss at present. I just returned home after an unexpected, six week, on-site, 24/7 parental medical "transition" including rather quickly changing cognitive status and multiple other systemic health issues to complicate everything. Now I have mountain of personal affairs to conquer, much of it urgent. This is very timely and valuable to me and I'll force time to read it today! I was putting a positive spin that maybe wrapping my brain around everything would increase my cognitive reserve, then read yesterday that dementia caregivers themselves have higher rates of AD :shock: Not to stray too much from the nuts and bolts ...
Sorry to hear that, Circular. I hope things have settled down and that you're able to get extensions on the deadlines.

I really hope that the caregiver's Alzheimer's correlation is not a causation!
Author of "The Military Guide to Financial Independence and Retirement". Royalties go to military charities.
Co-author (with my daughter): "Raising Your Money-Savvy Family For Next Generation FI."
To contact me, please send a PM.
circular
Senior Contributor
Senior Contributor
Posts: 5565
Joined: Sun Nov 03, 2013 10:43 am

Re: Alzheimer's caregivers, guardians, and conservators

Post by circular »

Nords thanks for all your help here!

I had started changing information under numerous online logins while there. A wrinkle that can occur is that when the account has been set up under a loved one's email, if you make a change, a notification goes to their email. In my case my mother knew I was doing this and wanted me to, so there wasn't worry about that, but I can imagine a scenario where that might not be the case. If they've already set up an account, it seems to take using their email to request a new password, changing the password to one you know but they don't, and then going and changing the email and other settings. They still may get a notification so just be aware if it's a touchy issue. My mother is having issues with logging in to anything and keeps changing the passwords at different websites. I left her with, among many other things, a list of reminders to go over every day (and I remind her to go over it every day). One is not to try changing the passwords but to call me for help with her online business. We'll see how that goes.

I quick checked the legal papers I stuffed in my bag and brought home and the POA is durable, one naming me and an identical naming my sibling. Anyone know if these are active at all times, whereas advanced directives (at least my mother's) require triggering by two doctors? In other words can I use the durable POA now to make changes to credit card and bank accounts independently (changes that can't be done online), or does it need triggering? I would like to close a couple credit card accounts after paying them off. Need to liquidate some stocks to pay them off. Etc. Will be doing this in consultation with my brother who's too busy to do the legwork, but not sure if we need to go to the attorney or some such thing.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
circular
Senior Contributor
Senior Contributor
Posts: 5565
Joined: Sun Nov 03, 2013 10:43 am

Re: Alzheimer's caregivers, guardians, and conservators

Post by circular »

Lucy5 wrote: My guess has long been that many of us (me included) would tend to be slow admitting to ourselves, let alone family/friends, that we have a developing problem.
One problem I saw happening for some time was my mother's circle of aging friends would all share their memory issues and agree it was just aging, since they all had them. But of course they're not the ones best prepared to sort which are normal aging and which aren't. My mother used the "I know it's just age, we all talk about it all the time" fallback for a long time, until she couldn't cope well anymore. That said, she's not dx with AD at this time but rather MCI. They need to rule out other things etc.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
Lucy5
Contributor
Contributor
Posts: 480
Joined: Sat Oct 03, 2015 10:52 am
Location: Colorado

Re: Alzheimer's caregivers, guardians, and conservators

Post by Lucy5 »

Circ wrote:
That said, she's not dx with AD at this time but rather MCI. They need to rule out other things etc.
Circ, I've been following your posts and understand what you're going thru. So tough. Hoping the MCI diagnosis has a benign cause that's actionable. Pls, hard as it is, take time for yourself somehow - know it's hard - but you have to do it! And you know your Mom would want you to. (Plus now you have all of Nords' experience/wisdom to help you cut thru some of the complexities of your situation.) Keep us posted on how things are going.
User avatar
Nords
Senior Contributor
Senior Contributor
Posts: 117
Joined: Sat Nov 02, 2013 8:55 pm
Location: Oahu.
Contact:

Re: Alzheimer's caregivers, guardians, and conservators

Post by Nords »

circular wrote:If they've already set up an account, it seems to take using their email to request a new password, changing the password to one you know but they don't, and then going and changing the email and other settings. They still may get a notification so just be aware if it's a touchy issue. My mother is having issues with logging in to anything and keeps changing the passwords at different websites. I left her with, among many other things, a list of reminders to go over every day (and I remind her to go over it every day). One is not to try changing the passwords but to call me for help with her online business. We'll see how that goes.
You're doing the best that can be done until your mother decides to turn over all the finances to you. The good news is that those checklists, post-its, and other reminders can be a tremendous help. But this is also a difficult phase because she may not be ready to let go of her responsibilities, or she may even be stressed out at forgetting to pay a bill.

I think that the excessive worry is all rooted in distress at their cognitive symptoms, but it's expressed as obsessions over mundane things like paying the rent or writing a check. All you may be able to do is reassure or redirect instead of correcting.
circular wrote:I quick checked the legal papers I stuffed in my bag and brought home and the POA is durable, one naming me and an identical naming my sibling. Anyone know if these are active at all times, whereas advanced directives (at least my mother's) require triggering by two doctors? In other words can I use the durable POA now to make changes to credit card and bank accounts independently (changes that can't be done online), or does it need triggering? I would like to close a couple credit card accounts after paying them off. Need to liquidate some stocks to pay them off. Etc. Will be doing this in consultation with my brother who's too busy to do the legwork, but not sure if we need to go to the attorney or some such thing.
I'm not a lawyer, but it sounds like your POA is a typical one that's active as soon as it's signed. If it had a trigger then it'd be a separate paragraph in the POA specifying the conditions.

The credit card company may fuss about wanting the POA on "their" form, which is an even longer delay in doing what you (and your mother) want done. On the other hand a credit card is unsecured debt so they may be very eager to get their hands on her money and close her account, with or without a POA.

You may have already tried this, but is your mother interested in speaking to the credit card company over the phone or in signing a letter that you wrote? On the phone, she'll just have to establish who she is and what she wants to do before turning the phone back over to you. By letter, she just has to sign your draft.

Once the accounts are closed you could have the credit-reporting agencies put a fraud alert or a freeze on her Social Security number. You'd be notified if anyone tries to apply for more credit in her name... including her.

I think the travel is the worst part. You're already stressed (even without having to navigate crowds of fellow travelers) and then you end up working The 36-Hour Day to get everything done before you have to head back home. You can't sleep well because your brain is buzzing with everything that has to be done before you join the crowd of fellow travelers, and it just becomes a vicious downward spiral.
circular wrote:
Lucy5 wrote: My guess has long been that many of us (me included) would tend to be slow admitting to ourselves, let alone family/friends, that we have a developing problem.
One problem I saw happening for some time was my mother's circle of aging friends would all share their memory issues and agree it was just aging, since they all had them. But of course they're not the ones best prepared to sort which are normal aging and which aren't. My mother used the "I know it's just age, we all talk about it all the time" fallback for a long time, until she couldn't cope well anymore.
Doctors (and patients) say that the patient is the first to recognize the cognitive decline, but then either denial kicks in or people just get frustrated with the medical system's never-ending tests. We went through the "slipping memory" phase for over a year, and by the point that Dad started using that phrase he was not interested in any help from "you boys" (we're in our 50s) or in "being a lab rat".
Lucy5 wrote:
Circ wrote:
That said, she's not dx with AD at this time but rather MCI. They need to rule out other things etc.
Circ, I've been following your posts and understand what you're going thru. So tough. Hoping the MCI diagnosis has a benign cause that's actionable. Pls, hard as it is, take time for yourself somehow - know it's hard - but you have to do it! And you know your Mom would want you to. (Plus now you have all of Nords' experience/wisdom to help you cut thru some of the complexities of your situation.) Keep us posted on how things are going.
MCI is hard to nail down. Ideally the doctor would have already ruled out a urinary tract infection, but that frustration is what drove Bob DeMarco to measure his mother's temperature every day.

Meanwhile MCI could be caused by prescription medication side effects, there's the possibility of a half-dozen different syndromes that start as dementia, and there's causes which can only be ruled out by spinal taps or complicated brain scans or sleep studies. Nobody wants to go through all of the tests and scans in the first place, let alone someone with MCI symptoms.

It reminds me of David Hilfiker's blog. He's diagnosed with MCI but that's all they've been able to figure out. They can't find any physical signs of Alzheimer's on the brain scans, and his latest neuropsych exam (after the second year of very real symptoms) says that he's stabilized. He's physically healthy but nobody seems to be able to come up with a better diagnosis.
Here's his October 2013 post about "it's not Alzheimer's":
http://davidhilfiker.blogspot.com/2013/ ... imers.html
and here's his Feb 2016 update:
http://davidhilfiker.blogspot.com/2016/ ... teful.html

Another example is Marie Marley, a guest poster on Bob DeMarco's blog. She was initially diagnosed with MCI but after many many more tests it proved to be severe sleep apnea:
http://www.alzheimersreadingroom.com/20 ... ot-to.html
It turns out that sleep apnea is much more prevalent in older adults than previously understood, and now it's one of the most common disability claims at the Veterans Administration among U.S. military vets.

I guess the only consolation I can offer is that you do the best you can as long as your elder is willing to accept your help.
Author of "The Military Guide to Financial Independence and Retirement". Royalties go to military charities.
Co-author (with my daughter): "Raising Your Money-Savvy Family For Next Generation FI."
To contact me, please send a PM.
circular
Senior Contributor
Senior Contributor
Posts: 5565
Joined: Sun Nov 03, 2013 10:43 am

Re: Alzheimer's caregivers, guardians, and conservators

Post by circular »

Thanks tons for the various thoughtful replies. I'm so thankful for this thread for practical tips and perspectives. It's good to be home and somewhat able to visit the forum and feel a little more connected again. I'll try not to take up the thread with replying in detail to all the great comments, just know that I'm taking it all in. Will try to just focus on things that will help others in this scenario.

Nords the links and your posts are great! Thank you!

UTIs have been an issue for years, so we're onto that, except for the taking temp 2x/day is brilliant and will start doing that. For others facing this issue, here's my current list for UTI prevention, all from medical professionals except the temp 2x a day, which should be!
  • - Take temperature 2x/day and have checked for infection with any rise from baseline
    - 1500 vitamin C a day to acidify urine
    - 500 d-mannose 2x/day and 500 cranberry extract 2x/day which e-coli will bind to instead of the bladder wall (won't help with other organisms; d-mannose is the active ingredient in cranberry but it's lower amounts in cranberry)
    - 6-8 cups water/day
    - VSL3 probiotics 1/day
    - Low sugar diet because bacteria feed on the sugar in urine, d-mannose is exception
    - Stay off anticholinergics which contribute to urinary retention
    - Keep anxiety down because it can increase urinary retention
    - Estrace cream to help with local tissue integrity
It was yet another UTI that led to this recent hospital episode, but she didn't come back as well as in the past and the memory issues have been worsening over the last year and especially last four months or so. Apnea explored and dx and waiting for CPAP. Off all anticholinergics (finally! been advocating for that for years!). Other meds scrutinized by multiple specialists. Getting high dose B6, B12 and FA to bring HCY down. B12 and methylmalonic acid testing were good. Thyroid good. Thankfully she now wants and seeks help with all her finances other than being able to spend money as needed/wanted. I most likely, but not certainly, got e4 from her since her mother (early onset which neurologist says indicates stronger genetics), aunt and maternal grandfather all had AD (grandfather undx memory issues so making a leap). As Mayo Clinic says of MCI, hope for the best but prepare for the worst. It's quite a logistical and psychological balancing act.
Last edited by circular on Wed Sep 07, 2016 12:45 pm, edited 3 times in total.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
User avatar
Nords
Senior Contributor
Senior Contributor
Posts: 117
Joined: Sat Nov 02, 2013 8:55 pm
Location: Oahu.
Contact:

Re: Alzheimer's caregivers, guardians, and conservators

Post by Nords »

circular wrote: Nords the links and your posts are great! Thank you!
[...]
It's quite a logistical and psychological balancing act.
You're welcome-- and holy cow, you've shoveled a lot of logistics to make all of that progress!

From what I read on the military veterans forums, that CPAP machine will make a huge difference as long as she's comfortable wearing it.
Author of "The Military Guide to Financial Independence and Retirement". Royalties go to military charities.
Co-author (with my daughter): "Raising Your Money-Savvy Family For Next Generation FI."
To contact me, please send a PM.
User avatar
Nords
Senior Contributor
Senior Contributor
Posts: 117
Joined: Sat Nov 02, 2013 8:55 pm
Location: Oahu.
Contact:

Re: Alzheimer's caregivers, guardians, and conservators

Post by Nords »

"How to be appointed a conservator"

Here's the outline of how to be appointed a conservator in Colorado. Every state has different laws and rules, but each has a similar process. Luckily they all have websites and helpdesks, too.

Conservators are appointed by the state probate court, who can "fire" family members at any time and replace them with a financial professional. (In defense of the probate court, they're way too busy. They'll only fire you if you really piss them off or if another family member contests your appointment.) The court's appointment letter grants a conservator the authority to manage their ward's assets. Unfortunately many financial firms (national, not just local) may ignore a state probate court appointment.

Conservators file annual reports with the state in exchange for a renewal of their appointment. The court supervises your fiduciary performance by reviewing your financial summaries and your "checkbook register". Conservators may also have to answer questions, provide additional data, or even submit to a full audit by a court's professional conservator.

The appointment process starts with a court filing by your lawyer asking that your intended ward be deemed incompetent to manage their own affairs. The ward is entitled to their own "defense" attorney, so there will be two sets of attorney fees. The court wants proof that the ward is incompetent. My father passed the Mini-Mental State Exam for years (as is very common among Alzheimer's patients) and we had to obtain an in-depth professional diagnosis. In my Dad's case it was a three-hour neuropsychologist interview.

The neuropsych asked Dad the Alzheimer's classic of drawing an analog clock and showing the hands at 3:20. Dad had to explain how to dial an outside line to call the fire department. He had to describe how he'd take care of a cut on his arm. There were dozens more independent-living questions that resulted in a long report for our plaintiff lawyer to file with the probate court, but everybody agreed with the report.

Bonus: when I filed Dad's initial claim on his long-term care insurance, John Hancock asked the care facility to document Dad's health and symptoms. The care facility did everything right, but Dad passed the MMSE with a full score and Hancock promptly denied the claim. A month later, after the neuropsych submitted his report on Dad to our lawyer for the probate court, I also used that report to resubmit Dad's LTC claim. Hancock agreed and paid the claim retroactive to the end of the Medicare benefits (and the end of the policy's elimination period).

Our lawyer was filing for both me (to be appointed as conservator) and my brother (as guardian). (Your state may require these jobs to be split up. Personally I'd hate to have to manage both duties on my own.) My brother and I had to pay for a criminal records check. We were both interviewed. My interview was done over the phone with a certified professional conservator who got paid $100/hour to interrogate me, and it was clear that I was competing with the professionals for "my job". He asked me why I thought I could handle my father's finances, let alone do it from my home in Hawaii. I explained that I was retired military and financially independent, that I'd written the book on it, I was running a blog, and other details. (He actually read my blog and checked the library for my book.) He agreed that I could handle the job. He said those were very good examples of my credibility and that I should not be humble or shy if the judge asked me about them.

I also had to sign a waiver of my extradition rights from Hawaii to CO. Now the court knows where I live and can fetch me anytime they want.

Side issue: There will be delays. Your conservator petition might not be your lawyer's top priority. You might have to document symptoms on your elder, or arrange more examinations from a medical professional who writes court testimony for lawyers. It might take weeks to get appointments and to write up the reports. While the lawyer's working the case, you may be paying your elder's expenses out of pocket. You might even be losing money on vacant homes, unused vehicles, IRA RMDs, maturing CDs, business expenses, and other deadlines. If you think your lawyer is not treating you (or your elder) well then it's perfectly acceptable to fire your lawyer, or talk with the state bar association, or contact your probate court's conservator help desk, or even to file directly with the court for an emergency hearing. They've all seen it before. In my case, at one point I was carrying Dad for over $18K of expenses (which he later reimbursed). We all know that we're supposed to have emergency funds, but nobody has an emergency fund for that.

The court hearing was anticlimactic. I dialed in to a teleconference with Dad, my brother, the judge, and the lawyers. My contribution to my appearance was a single "Yes, your honor" when the judge asked if I wanted to be the conservator. The appointment letter came in the postal mail a week later.

The probate court only communicates by postal mail, although I can phone a clerk if I need info from their computer network. The court's self-help service lets you can ask questions of a professional conservator. (Frankly I'm afraid to use it for fear of causing them to wonder whether I can handle the job.) When I have questions I call Dad's estate lawyer (a family friend) who's just happy to advise a family member on how to handle his old buddy's finances.

Conservator's appointments get no respect. My father's local bank (where his pension and Social Security are deposited) was not amused to deal with a conservator. They'd effectively locked me out of Dad's account for the nine months it took to get the appointment, and they dragged their feet again when I told them I'd be moving money out of Dad's account. (I had to tell the bank manager that we should chat with the probate court.) Today I have my own separate login/password for Dad's account and I've been told that they monitor the account activity. When I asked about opening some CDs, they had so much "know your client" bureaucratic documentation paperwork that I gave up.

Another national credit union simply refused to open a new account on a conservator's appointment. They "didn't want to deal with it". I eventually found two outstanding places where I could set up CD ladders.

In another post I'll talk about what I did after receiving the conservator's appointment, and what I do for the conservator routine.
Author of "The Military Guide to Financial Independence and Retirement". Royalties go to military charities.
Co-author (with my daughter): "Raising Your Money-Savvy Family For Next Generation FI."
To contact me, please send a PM.
User avatar
Stavia
Contributor
Contributor
Posts: 5255
Joined: Tue Apr 29, 2014 6:47 pm
Location: Middle Earth

Re: Alzheimer's caregivers, guardians, and conservators

Post by Stavia »

Finances are tricky. I am in a different country so this may not apply. When my mum got into her mid 80s, we went to the bank and she made me a full signatory on her account. We just took our passports and drivers licences as identification. I had then had legal powers to transfer monies, use a cash card etc. At the moment of her death this lapsed and the account was frozen but I was executor of her will so it was just a bit of paperwork at the bank to get the remaining couple thousand dollars released to help with her funeral expenses.
(This was separate to the powers of attorney for property and for health which I got before the dementia was too apparent)
Does this option not exist in the US?
circular
Senior Contributor
Senior Contributor
Posts: 5565
Joined: Sun Nov 03, 2013 10:43 am

Re: Alzheimer's caregivers, guardians, and conservators

Post by circular »

Nords wrote:I really hope that the caregiver's Alzheimer's correlation is not a causation!
I suspect and think the article indicated it's about the contribution from significant ongoing stress which wouldn't be there is the caregiver role wasn't, ie, additive with other stresses. Too much for our neurons.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
Post Reply