Alzheimer's caregivers, guardians, and conservators

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Stavia
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Alzheimer's caregivers, guardians, and conservators

Postby Stavia » Wed Aug 31, 2016 12:17 pm

We have had several requests for information and support around this very critical topic, and I am delighted to announce that Nords has offered to share his extensive knowledge in this area. He has rewritten the most important parts of his advice for the general population, not only military, and will be posting the information here. He is welcoming comments on this thread, so that we can discuss issues in our usual way. We are very grateful that he has offered to share his extensive knowledge with us, and to answer any questions you might have.
Thank you Nords!!!

Doug Nordman is a U.S. Navy submariner who retired in 2002 at the age of 41. He and his spouse (a retired Navy Reservist) reached financial independence in 1999 (on a high savings rate). Their daughter, born & raised in Hawaii, is also in the Navy. Doug wrote the book about military financial independence for U.S. service members, veterans, and families, and all of his writing revenue goes to military-friendly charities.
Doug and his brother are the conservator and the guardian for their father, who's in a care facility with mid-stage Alzheimers. Someday the Nordman family experiences will be the topic of another book. Let's start it here

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Re: Alzheimer's caregivers, guardians, and conservators

Postby Julie G » Wed Aug 31, 2016 1:55 pm

Thank you, NORDS! As the primary caretaker for my Uncle, I shall look forward to your words of wisdom. I'm currently using a POA for everything, but know I need to exert more of a total guardianship role as his dementia progresses. Any advice for how to get started with that? What's been most frustrating to me is that many institutions (Social Security, banks, insurance, cell phone providers, etc.) have their own protocol for me to achieve that control. It's certainly not a one-size-fits-all making it difficult. Grrrrr.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Wed Aug 31, 2016 2:07 pm

(Julie, I'll put this up first and then answer your question in a separate post.)

Welcome to a discussion about the other side of the dementia problem: providing care.

I have over six years of practical experience with caregiving (the hard way), and this thread is designed to help you learn from our mistakes.

If you're worried about developing dementia then you're probably highly motivated to optimize your health, your cognition, and your environment. Yet you might be focusing on the wrong side of the question.

Yes, if your dementia begins then you'll be aware of your cognition problems, and you'll be upset about it. The "good news" (for you) is that if your cognition continues to decline, eventually your awareness will fade. Dementia makes you more of what you already are, and many become blissfully ignorant of their condition.

Meanwhile your spouse, family, and friends will still be keenly aware of your symptoms and your decline. Everyone around you will be suffering what's politely known as "caregiver stress".

Dementia symptoms (and their associated diseases) can kill you within a few years to a couple decades. Caregiver stress, if left untreated, can kill almost as quickly.

It doesn't matter how much money (or insurance) you have: if you neglect your affairs and make it harder on your caregivers, then you'll be hurting them far more than dementia hurts you. You'll be unaware (or dead) but the caregiver pain will linger for years.

My apologies for my lack of tact. My brother and I are taking care of my father, and we have it pretty good for caregivers, but we have definitely been stressed by Dad's lack of preparation. Ironically Dad's father did it to him 25 years earlier, and Dad promised us sons that he wouldn't do the same. By the time dementia impaired his cognition, it was way too late to do the right kind of planning. I'm here to keep that from happening to a third generation.

This thread will eventually include advice and links to more resources. Bear with me while I explain the background.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Wed Aug 31, 2016 2:27 pm

Juliegee wrote:Thank you, NORDS! As the primary caretaker for my Uncle, I shall look forward to your words of wisdom. I'm currently using a POA for everything, but know I need to exert more of a total guardianship role as his dementia progresses. Any advice for how to get started with that? What's been most frustrating to me is that many institutions (Social Security, banks, insurance, cell phone providers, etc.) have their own protocol for me to achieve that control. It's certainly not a one-size-fits-all making it difficult. Grrrrr.

The POA is a great start, but (by U.S. law) POAs are supposed to be void when the grantor (the dementia patient) is no longer competent.

Hopefully by the time the POA is void, you (the caregiver) already have access to their finances through websites, logins, and online bill pay. I suspect that this is what most spouses (and most adult children) are doing. I also suspect that the financial institutions will officially allow online logins without wanting to know precisely who has the login/password, because they have no way of knowing whose hands are on the keyboard.

I learned (the hard way) not to write out my Dad's checks for him to sign. His bank manager called back as soon as the checks were routed back to them for reconciliation, and she politely threatened to lock me out if I didn't get a POA. It took nine months for me to be able to get back to her with a conservator's court order, and they dragged me through a bureaucratic knothole to give me the access to Dad's account.

So if your elder is still able to speak for themselves, get them signed up now for as much online access as you can. Edit the account profile to have the companies go paperless and do their business online, and give your phone number as the contact. Have your elder sign up for their online Social Security account.

It's possible that a prosecuting attorney (or financial institution) could view this as misrepresentation or even fraud. But if you act in a fiduciary manner, with their interests in mind, then you'll probably simply be admonished to file for guardianship/conservatorship.

Guardian/conservator is the next step after POA. It's the state probate court giving you an appointment to run the affairs of your elder. It's a pain, but it's supervised and protected.

I'm not a lawyer and I don't have financial advisor initials after my name, but I firmly believe that the best option (in the U.S.) is a revocable living trust with the spouse and a trusted adult child as the contingent trustees. That's the approach my spouse and I (and our daughter) are taking while we're still mentally competent to do it.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Wed Aug 31, 2016 3:12 pm

This post is about my Dad.

This background helps explain my later posts about our caregiver experience and our mistakes. The next post will give more links to caregiver resources.

image.jpeg


Dad is an electrical engineer who sold nuclear power plants for Westinghouse in the 1960s-70s. He was widowed in 1987 (at age 53) and retired later that year. In 1988 he took over the affairs of his father, who spent the next 14 years in a care facility before dying of influenza. (That's a whole 'nother story for a different post.) Over the years my Dad became progressively more withdrawn from his friends & neighbors, favoring long walks or camping trips on his own. Today Dad's nearing the end of mid-stage Alzheimer's.

In 2008 (age 74) he felt his cognition declining. (Three years later, I figured this out from his medical records.) His doctor discussed the possible causes, tweaked Dad's blood pressure medication, and advised him to see a specialist if he didn't feel better in six months. Tragically, Dad mis-filed the doctor's written summary and never found it again.

In late 2009 Dad told my brother and me that his "slipping memory" made it hard for him to use his computer. That earned him our first family visit in over a decade. His dementia symptoms were blatantly obvious but he was coping and he refused all offers of help. He didn't even want to prepare a power of attorney and leave it in his home safe.

My brother and I consulted geriatric care managers and were told "Don't argue or nag, keep the lines of communication open, and wait until he asks for help." We did the best we could while Dad resumed his hermit habits. We hired a GCM in his town and waited for the next opportunity.

In January 2011 (as I reconstructed from Dad's financial records) his cognition abruptly declined. (This is common with Alzheimer's.) By March 2011 his malnutrition aggravated a perforated ulcer and he ended up in the hospital emergency room for "slash & mop" surgery. While Dad recovered in the ICU my brother, I, three GCMs, and the hospital coordinator scrambled for three days. We located a skilled nursing facility near my brother's home for Dad's surgery rehab. The surgeon "ordered" Dad to go there, and the doc also wrote up an Alzheimer's diagnosis for us to use with a care facility.

As Dad's rehab finished, the SNF offered him a semi-private room at their care facility. We gratefully accepted.

For the first few years at the care facility, each morning he'd wake up disoriented about where he was and what he should do. We and the staff reassured him and he would relax. He was prescribed Aricept and Namenda and he was able to carry on a conversation for 10-20 minutes before repeating himself. He went through physical, occupational, and speech therapy to recover his strength and to slow his cognitive decline. He was very social with the other residents, to the point where some visitors thought he was a volunteer.

Dad decided that he was an engineering consultant in a hotel (his care facility) helping them sort out their electrical needs. He was relieved that they let him stay there on weekends because his "slipping memory" made it hard for him to remember how to drive back to his apartment. Whenever he'd get upset by noise or other residents, he'd take his briefcase or suitcase to the care facility's front desk and ask to "check out of this hotel". He'd also try every exit door in the facility as he searched for the conference room where his "business meeting" was being held. He was usually willing to go out for Sunday lunch with my brother and maybe the zoo or a museum, but as the months went on (and the symptoms progressed) he tired quickly. He was usually happily relieved to return to the care facility.

Today, eight years after first sensing the onset of dementia, he's once again withdrawn from society. He's deep into the middle phase, or halfway through stage 6. He's lost all of his short-term memory, his problem-solving skills, and his abilities to read or to follow a conversation. As his symptoms have progressed, he's tried low doses of an antidepressant (Lexapro) and that's been changed to a low dose of an anti-anxiety medication (Risperidone). He's still mobile (and still in control of his bladder/bowels) but he spends most of his time in his room working on jigsaw puzzles. They're considered good for Alzheimer's cognition, and he no longer wants to be around people.

By the way, I'm a nuclear engineer too and I'm almost 56 years old. One of my motives for writing about Alzheimer's is to learn all I can about taking care of my family (and our finances) in case they someday have to take care of me. My spouse is of Ashkenazim ancestry and she expects to live at least a century. Our daughter is also in the Navy, she has a civil engineering degree, and she's currently at Nuclear Power School learning to be a third-generation nuke.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Wed Aug 31, 2016 3:21 pm

The very first caregiver resource that I recommend is Bob DeMarco's Alzheimer's Reading Room:
http://www.alzheimersreadingroom.com/
It's the Internet's top resource for helping you help your loved one.

Whether or not you're a caregiver, you should subscribe to it and read the posts. There are nearly 5000 of them and new ones go up nearly daily, but they're relatively short and much of the material is repeatedly reinforced.

Bob is not a doctor. (He was a marketing exec.) His caregiver approach is based on years of trial and (mostly) error. During the eight-plus years that he cared for his mother, he keenly observed what worked and did more of it. They both started out grumpy and frustrated, but as he tried new solutions to every situation they both became happier.

The first thing he learned (the hard way) was how to communicate in Alzheimer's World:
http://www.alzheimersreadingroom.com/20 ... world.html
Essentially, you learn to stop correcting and explaining and arguing.
The best approach is reassurance and redirection.

Next he learned how to cope with various behaviors:
http://www.alzheimersreadingroom.com/20 ... kills.html
Alzheimer's patients translate their emotions directly into words without tact or filtering. If they're confused or angry then they'll lash out. If they're afraid then they'll withdraw and refuse. You can't discuss or reason with someone who's lost their cognitive ability. "No!" is their easiest word to remember.

Bob observed many crucial aspects of Alzheimer's that are still being confirmed by research (but happily put into practice by caregivers).

For example, he learned that when his mother's temperature rose by a degree, she almost certainly had a urinary tract infection. UTI symptoms can mimic dementia and even be confused with disorientation and hallucination before turning into life-threatening sepsis. The issue was that his mother's normal daily temperature was 97.4 degrees, so when he took her to the doctor a 98.6 degree temperature was declared "normal". Bob learned to check his mother's temperature every morning, and he went through several doctors as well. He also learned to get his mother into the bathroom every 90 minutes.

Another problem that Bob noticed: his mother could not easily see water. This made her afraid of the shower and of swimming pools. Researchers have now documented the same issue with the perception of Alzheimer's patients.

A third problem: Plain white plates make it difficult for Alzheimer's patients to see their food (and eat it). He recommends using red plates for a strong color contrast.

Bob has dozens of other caregiver recommendations, and his guest posters offer hundreds more.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Julie G » Wed Aug 31, 2016 5:31 pm

Thank you for starting this thread and sharing your Dad's story. From this post and others, I know a little bit about the journey you've been on with your Dad. Nothing prepares us to become the caretakers.

EXCELLENT advice to manage all of my Uncle's accounts and bills online until we're ready to formally take the next step in terms of legal guardianship/conservator. You're an amazing son and very generous to broadly share what you've learned.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby J11 » Wed Aug 31, 2016 6:44 pm

Great idea Nords!

The forum has not concentrated enough on the day to day living with dementia.
Having the legal and financial aspects of dementia fully determined certainly is a very wise idea.
Quite a few dementia families have a very clear timeframe when the functional milestones will emerge, though for
whatever reason people tend to put off having everything in order until a complex and often expensive legal guardianship
problem arises.

Dementia truly is difficult enough without having to involve outsiders who typically have no insight into the culture of
dementia families.

(Wow! Is that scenic look out as dangerous as it looks! I am having gitters just looking at the photo.)

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Re: Alzheimer's caregivers, guardians, and conservators

Postby Tincup » Wed Aug 31, 2016 8:05 pm

Nords wrote:The POA is a great start, but (by U.S. law) POAs are supposed to be void when the grantor (the dementia patient) is no longer competent.


I'm not a lawyer either, but my dad was. This is my understanding:

“Durable” means lasting. Normally, if you become mentally incompetent, the power of attorney is not good any more. But you can write that you want to continue the power even if you become incompetent. Then it is called a durable power of attorney. If you say on it “This power of attorney shall not be affected by incapacity of the principal” it would be a durable power of attorney. If you do become mentally incompetent, a durable power of attorney can only be ended by a court-appointed conservator.

This may vary by state.

I had a durable power of attorney for my demented mother and never had an issue using it during her life.

However I agree that a trust is a great way to go and I had also set up one of those (and my own assets are all in trust with family co-trustees). I also concur that getting everything online as much as possible simplifies things greatly.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Thu Sep 01, 2016 9:58 am

Thanks, Julie, I've learned a lot!

J11 wrote:(Wow! Is that scenic look out as dangerous as it looks! I am having gitters just looking at the photo.)

It's the Visitor Center at Colorado's National Monument park near Grand Junction. Dad used to hike there 2-3 times per week, 5-10 miles per hike.

I took that photo in November 2009 when the roads were covered with snow & ice. Dad was in early-stage Alzheimer's back then, and he frequently got lost, but he was still a good driver. Regardless, those narrow icy roads with the steep drops were terrifying.

16 months later when Dad was recovering in the hospital's ICU, he kept asking for his car keys so that he could "drive back home". I kept saying "Sure!" and handing them over. 10 minutes later when I was ready to leave, I'd mention that the doctor was coming to see him in a few minutes and I was going to run errands while Dad was busy with the doctor. Could I borrow the car keys back? Dad always readily gave them up. It was never about driving-- it was about being in charge.

When we drove him from the hospital to the care facility, we parked his car out front where he could see it from the lobby. He wanted to drive home as soon as he was finished with the rehab. Within the hour Alzheimer's took that memory from him. I gave the keys to my brother who used it to drive Dad to appointments and lunches. Dad usually remembered that it was his car but he no longer wanted to drive it, and he was happy to just give my brother helpful suggestions on his driving skills.

Nine months later when I was appointed conservator, I had Dad sell the car to my brother for $1. (We suggested it to Dad and he agreed.) Dad happily signed over the title and my brother did the transfer paperwork. DMV didn't ask any questions. Months after that Dad eventually recognized that his license had expired, and he threw it away. He had no interest in driving anymore.

My brother and I are fortunate that Dad was renting an apartment (no real estate to sell) and that his investments were relatively simple (no IRA or rental properties or business partnerships).

GeorgeN wrote:
Nords wrote:The POA is a great start, but (by U.S. law) POAs are supposed to be void when the grantor (the dementia patient) is no longer competent.


I'm not a lawyer either, but my dad was. This is my understanding:

“Durable” means lasting. Normally, if you become mentally incompetent, the power of attorney is not good any more. But you can write that you want to continue the power even if you become incompetent. Then it is called a durable power of attorney. If you say on it “This power of attorney shall not be affected by incapacity of the principal” it would be a durable power of attorney. If you do become mentally incompetent, a durable power of attorney can only be ended by a court-appointed conservator.

This may vary by state.

I had a durable power of attorney for my demented mother and never had an issue using it during her life.

However I agree that a trust is a great way to go and I had also set up one of those (and my own assets are all in trust with family co-trustees). I also concur that getting everything online as much as possible simplifies things greatly.

Yep, a durable POA seems like the solution.

As Julie has mentioned, the financial institutions in particular are notorious for wanting the same verbiage on their own forms. By the time you're using a durable POA, the grantor is probably no longer competent to sign all the other individual forms. The other option would be to prep all of those durable POAs on the appropriate forms so that you had them ready when needed. I suspect that the business would still try to weasel out of the POA.

Businesses will not respect a conservator appointment letter from the state probate court, either. I've occasionally been able to cajole the reluctants with a phone call (politely threatening legal action) but it's far easier to go online and sign up without sharing all the details.

I've gone online to open bank accounts (for CDs) and to transfer assets between Fidelity Investments & Vanguard. I never volunteered that I was doing it under a conservator's appointment, and nobody asked. Nobody could tell that it was me instead of Dad's fingers on the keyboard. This may be technically illegal but contrition is far easier (and faster) than permission-- and I acted in a fiduciary manner. I also kept the records (and I reported the transactions to the probate court in my conservator's annual report) but I have the appointment letter if anyone objects.

I'll talk more in another post about the process of becoming a conservator... and dealing with the bureaucracy.
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