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Alzheimer's caregivers, guardians, and conservators

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

Postby Nords » Thu Sep 01, 2016 10:24 am

About my grandfather (Dad's Dad)

There are no resource links in this post, yet it shows how Alzheimer's can rob a person of even the best of intentions. Take heed of this cautionary tale for both yourself and your elders.

I have to admit that it's therapeutic for me to write this, too. It motivates me to make sure that I don't do this to my spouse or our daughter, either. If you're dealing with a reluctant elder, you can always show them this thread and ask them if they really intend to do that to you.

My attitude toward dementia (and a healthy lifestyle) is influenced by my father's experiences, but it was formed by my grandfather. It seems that genetics has loaded our family gun. I'm trying to lock all the triggers.

Grandpa's dementia probably began in his late 70s, and (in retrospect) Grandma covered for him. She died suddenly in 1984 and he continued his cognitive decline. In 1988 (age 84) he stopped paying his apartment rent at the continuing care retirement community. The manager contacted my father and Dad visited Grandpa, immediately realizing that Grandpa could no longer live independently. Dad moved Grandpa to the community's full-care facility. Dad started a 14-year routine of commuting 1500 miles every few months to check on Grandpa and work on his affairs. Grandpa died in 2002 at age 98 of influenza. We never had a diagnosis on his dementia. Although he was afflicted by dementia (perhaps vascular dementia) his decline was relatively slow.

Meanwhile Grandpa's affairs were a disaster. After Grandma died he stopped answering the phone and the doorbell, although he still walked around the community talking with people. Four years later (when he moved to the care facility) he had not filed any tax returns (let alone paid any taxes) for over four years. He had stacked the daily mail in the spare bedroom, including tax-due notices, dividend checks (from stock/bond distributions), and utility bills among the daily newspapers and magazines. (The bedroom was filled nearly to the ceiling.) Every day, three times per day, he walked to the local Friendly's restaurant for the same breakfast combo meal. (It's a heart-attack special.) He always paid the bill in cash and left a $20 tip, so none of the wait staff were going to call attention to his behavior. He still drove flawlessly, and one day he drove to his local bank. He emptied his safe deposit box into a briefcase which he eventually put in his car trunk... and then forgot about it.

The IRS, the state tax bureau, and the utility companies all sent their demand letters. The IRS simply reverted to assessing penalties + interest but never seized any assets. The utility companies also kept rolling over the unpaid balances (at 18% APR) but they never cut off any services. If Grandpa had used autopay in the 1980s for his rent, we never would have known there was a problem.

It took Dad over two weeks just to separate the mail from the trash. (He hired housecleaners for the rest of the apartment.) A month later he'd managed to dispose of Grandpa's furniture and possessions. He hired a lawyer to help with the tax returns (and the uncashed investment dividend checks). Dad found Grandpa's missing briefcase in the car trunk just before he sold it to the new buyer. (It had been there for several years.) The briefcase still held the contents of the safe deposit box: thousands of dollars in cash and bearer bonds, along with Grandma's jewelry and other keepsakes.

After six months of legal filings and court hearings, Dad was appointed conservator/guardian and began sorting out the rest of Grandpa's financial accounts. It took nearly four years of negotiations (and legal bills) to settle everything.

Over the years, Dad promised us sons that he'd never put us in this situation. Yet (for whatever reason) he never even took the first step to let us help him. In 2009 by the time he first told us about his symptoms, it was way too late.

I'll talk about Alzheimer's finances and resources in more posts.
Author of "The Military Guide to Financial Independence and Retirement". Royalties are donated to military charities.
Spring 2020: "Raising Your Money-Savvy Family For Next Generation FI."
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Sat Sep 03, 2016 6:45 am

I write about military financial independence on the blog The-Miitary-Guide.com. (Hint: it's the same math and investing advice as civilian financial independence, just with the military's pay/benefits programs.) I also write about the lifestyle and family issues, and I share personal stories.

That's why I've written blog posts about the finances and other issues of caring for my Dad. Here's the chronological list of 19 posts along with a brief description.

The first two posts discuss the finances of long-term care insurance and the federal government's program for its civil-service and military retirees & families.
http://the-military-guide.com/military-long-term-care-insurance/
http://the-military-guide.com/military-long-term-care-insurance-part-2-of-2/
I need to update those two posts because today's LTC insurance industry is even more broken than five years ago.

This post was written five months after Dad's surgery as we started getting a handle on his care and his finances... including the claim on his long-term care insurance policy.
http://the-military-guide.com/financial-lessons-learned-from-caring-for-an-elderly-parent/

More updates and links to financial websites for long-term care and Alzheimer's.
http://the-military-guide.com/more-on-caring-for-an-elders-finances/

Here's an update on getting a conservator's appointment from the probate court:
http://the-military-guide.com/geriatric-financial-management/

A rant about John Hancock's primitive 20th-century methods of processing a long-term care insurance claim. Another update about the conservator interviews and court hearing.
http://the-military-guide.com/geriatric-financial-management-update/

Jane Gross' book about her mother's end-of-life care.
It's a very dark book with much unhappiness and drama, but it shows one aspect of a family's dynamics and the nation's eldercare system. Look for it at your local library.
http://the-military-guide.com/book-review-a-bittersweet-season/

Finally: after nine months of lawyers and court paperwork I became Dad's conservator.
http://the-military-guide.com/geriatric-financial-lessons-learned/

Paula Span's upbeat discussion of eldercare. Highly recommended.
She wrote the NYT column "The New Old Age" for several years, and she did extensive research for this book. Look for it at your local library.
http://the-military-guide.com/book-review-when-the-time-comes/

The 36-Hour Day is the caregiver's bible. You can read an earlier edition at the library, but if you're a caregiver then you should buy at least the paperback and perhaps the eBook. I'd also buy extra copies for all your siblings and other family members, especially if they're prone to offering "helpful suggestions" about your caregiving.
http://the-military-guide.com/book-report-the-36-hour-day/

What you find when you sort out the files of an Alzheimer's parent.
http://the-military-guide.com/forensic-geriatric-finances/

I finally found Dad's military discharge papers. I also started to rebalance his investment portfolio, which he had allowed to drift up to 85% equities.
http://the-military-guide.com/geriatric-financial-management-update-2/

I used my blogger connections to score an interview with an exec in the long-term care insurance industry. Let's just say that their awareness is the first step to finding solutions to the problem.
http://the-military-guide.com/interview-whats-wrong-with-long-term-care-insurance/

Our family did 23andMe testing in early 2013, back before the FDA weighed in. I was shocked to learn that I'm a carrier for cystic fibrosis... and now our daughter is too. It would've been nice to know that back when we started our family.
http://the-military-guide.com/23andme-genetic-testing/

When I rebalanced my Dad's investments, I ran head-first into the brick wall of Medicare IRMAA. Read this if you're approaching Medicare age, and perhaps do your rebalancing before you start paying Medicare premiums.
http://the-military-guide.com/how-i-cost-my-dad-over-2000-in-medicare-benefits/

The issues of discussing eldercare finances with your parents.
I wish I had more solutions here. "Good luck."
http://the-military-guide.com/the-pitfalls-of-your-parents-finances/

I wrote this post in late 2014. A few months ago, the Federal Long-Term Care Insurance Program (John Hancock) boosted the premiums on existing policies by 25%-100%.
http://the-military-guide.com/wont-buy-long-term-care-insurance/

This post is for military veterans. You're the only person who knows all the details of your military career, so file your disability claim with the Veterans Administration before your family (and your caregivers) have to try to do it for you.
It took nearly a year to find my Dad's military records. Once we had the exact dates of his service we were able to determine fairly quickly what I had already suspected: he's not eligible for any veteran's benefits.
http://the-military-guide.com/file-veterans-disability-claim-not-just/

Last January we had to move Dad to a new care facility. Everything worked out but it was a scramble.
http://the-military-guide.com/alzheimers-care-financial-update/
Author of "The Military Guide to Financial Independence and Retirement". Royalties are donated to military charities.
Spring 2020: "Raising Your Money-Savvy Family For Next Generation FI."
I don't read every post- please send a PM.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby Tincup » Sat Sep 03, 2016 8:58 am

Pursuant to my previous post, investigating the durable power of attorney question in my state, Colorado. This will obviously vary by state or country. Apparently, Colorado adopted the Uniform Power of Attorney Act in 2009. Clearly worth paying attention to.

C.R.S. 15-14-704

COLORADO REVISED STATUTES

*** All titles of the Colorado Statutes have been updated and are current through the laws passed during the 2016 Legislative Session, subject to final review by the Colorado Office of Legislative Legal Services. ***

TITLE 15. PROBATE, TRUSTS, AND FIDUCIARIES
COLORADO PROBATE CODE
ARTICLE 14. PERSONS UNDER DISABILITY - PROTECTION
PART 7. UNIFORM POWER OF ATTORNEY ACT
SUBPART 1. GENERAL PROVISIONS

C.R.S. 15-14-704 (2016)

15-14-704. Power of attorney is durable

(1) A power of attorney created on and after January 1, 2010, is durable unless it expressly provides that it is terminated by the incapacity of the principal.
(2) A power of attorney existing on December 31, 2009, is durable only if on that day the power of attorney is durable under section 15-14-501 or 15-14-745 (2).

Then for older POA's:

15-14-501. When power of attorney not affected by disability

(1) Whenever a principal designates another his attorney-in-fact or agent by a power of attorney in writing and the writing contains the words "This power of attorney shall not be affected by disability of the principal." or "This power of attorney shall become effective upon the disability of the principal." or similar words showing the intent of the principal that the authority conferred shall be exercisable notwithstanding his disability, the authority of the attorney-in-fact or agent is exercisable by him as provided in the power on behalf of the principal notwithstanding later disability or incapacity of the principal at law or later uncertainty as to whether the principal is dead or alive. The authority of the attorney-in-fact or agent to act on behalf of the principal shall be set forth in the power and may relate to any act, power, duty, right, or obligation which the principal has or after acquires relating to the principal or any matter, transaction, or property, real or personal, tangible or intangible.
Tincup
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Nords
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Mon Sep 05, 2016 2:50 pm

Another financial/conservator issue: long-term care insurance.

A conservator job is relatively straightforward. The care facility and my brother are physically caring for Dad, and I just have to keep an eye on his money. I'm retired, too, so I have the time & energy to keep up with all the numbers and the paperwork.

In the links of my earlier posts I describe how stressful it was to file my father's long-term care insurance claim with John Hancock and to monitor the payout. Near the end they even tried to short-change Dad by bluntly stating that he'd used up the benefits. When I showed them my spreadsheet of the last 3+ years of payments and explained that they still owed him $6175, they made a final deposit. No explanations, let alone an apology.

I wonder how many times John Hancock has used that tactic on other families. It's evil if they're doing it on purpose, but (even worse) it might be sheer incompetence. If they can't track a payout, then why would we think that they'd be able to price a policy and earn enough profit to stay in business?

The finances of the long-term care insurance industry have only deteriorated since then.

A couple years ago, Boston College's Center for Retirement Research overhauled the data on long-term care.
http://crr.bc.edu/briefs/long-term-care-how-big-a-risk/

The existing actuarial statistics were over two decades old, and the update indicated that long-term care might not be as long-term anymore. The CRR study found that more elders were using long-term care for rehab after a hospital stay, but they were using it for shorter times-- which is mostly covered by Medicare.

That's great news for elders... as long as you're not suffering from dementia. Generic geriatric demographic statistics aren't much help for Alzheimer's patients because they'll use long-term care for months or even years. Not only is Alzheimer's the #1 reason for a LTC insurance claim, but it's 50% of the claims.
http://www.fa-mag.com/news/ltc-insurance-restrictions-28564.html?issue=268

The article also highlights one of the biggest problems with long-term care insurance: selection bias. The people who need it the most are unlikely to ever live independently again, and they file the most expensive claims. Insurance companies (using the old data) expected that more people would sign up for long-term care insurance, and that more people would drop out after a few years. Their actuarial analysis was flawed from the beginning, and it's driven most of the insurance companies out of the business. In the last decade the policies in effect have declined by 70%.
http://www.stretcher.com/stories/16/16sep05d.cfm?DS0905

The most recent blow to the industry is the newly-negotiated contract with the Federal Long-Term Care Insurance Program. It's run by the federal govt for civil-service retirees, military retirees, and their immediate families. The premiums are not subsidized by the govt but when you're negotiating on behalf of millions of clients then you'd expect to get a volume discount.

However only one insurance company even bothered to bid on the latest contract: John Hancock. (Met Life dropped out and Genworth didn't even try.) Along the way, Hancock has sent out letters to the existing FLTCIP clients raising their premiums as much as126%.
http://federalnewsradio.com/benefits/2016/07/long-term-care-enrollees-get-coverage-options-higher-premiums-in-2017/

Due to my personal experience, and the finances of (what's left of) the industry, I'm not buying long-term care insurance. I'd hate to think that Hancock would apply the same payout tactics to my spouse or daughter that we experienced with my father, and I doubt that the industry's finances are sustainable. People who have more than $2M in assets could probably self-insure, and people with less than $1M could probably spend down their assets for Medicaid (with spouses protected under Medicaid rules). The LTC insurance premiums for people with less than $1M are almost certainly unaffordable.

Part of self-insuring is staying as healthy as you can. It's had a powerful impact on me.

Another part of self-insuring is making sure that your affairs are in order so that your family doesn't have to untangle all the pieces and try to figure out what decisions you would have made. Everyone is in much better shape when you have a durable POA or a revocable living trust that gives them the authority.
Author of "The Military Guide to Financial Independence and Retirement". Royalties are donated to military charities.
Spring 2020: "Raising Your Money-Savvy Family For Next Generation FI."
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nancy » Mon Sep 05, 2016 7:17 pm

Thank you. This is all so helpful, Nords....what a wealth of information. I'm sorry to hear about all of the struggles in your family, though. It sounds like you are a lot more prepared/organized than most. You are doing so much for so many. God bless you, indeed.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Lucy5 » Mon Sep 05, 2016 7:57 pm

Nords,
I can't tell you how much I appreciate all you've shared with us. The cautionary message is powerful, and the specific advice you've posted to date on how to deal with the multitude of issues that arise in caring for family members experiencing dementia, while very sobering, is incredibly helpful.
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. But I also believe that none of us wants our families to go through what yours and so many others have. A bit of a paradox, but human nature, I suspect. Lots to think about here...can't thank you enough.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Tue Sep 06, 2016 3:34 am

Nancy wrote:Thank you. This is all so helpful, Nords....what a wealth of information. I'm sorry to hear about all of the struggles in your family, though. It sounds like you are a lot more prepared/organized than most. You are doing so much for so many. God bless you, indeed.

Lucy5 wrote:Nords,
I can't tell you how much I appreciate all you've shared with us. The cautionary message is powerful, and the specific advice you've posted to date on how to deal with the multitude of issues that arise in caring for family members experiencing dementia, while very sobering, is incredibly helpful.
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. But I also believe that none of us wants our families to go through what yours and so many others have. A bit of a paradox, but human nature, I suspect. Lots to think about here...can't thank you enough.

You're welcome. I enjoy helping, this is my occupational therapy, and (years from now) this might be a short eBook. So I'd better not screw up the preparations, right?

Powerful motivation: when you're sitting in an elder's apartment (while they're in the ICU), gazing at all of the clutter which reminds you that they can no longer care for themselves, and figuring out how not to do this to any of your loved ones.

I'm working on a post about the probate court's process of appointing a conservator, and maybe one more post about what a conservator really does.
Author of "The Military Guide to Financial Independence and Retirement". Royalties are donated to military charities.
Spring 2020: "Raising Your Money-Savvy Family For Next Generation FI."
I don't read every post- please send a PM.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby Stavia » Tue Sep 06, 2016 4:12 am

Nords, you are a treasure and we greatly appreciate your work.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby circular » Tue Sep 06, 2016 10:05 am

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 ...
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby Ruth » Tue Sep 06, 2016 12:46 pm

Circular, so sorry you are going through this right now.


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