Alzheimer's caregivers, guardians, and conservators

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KatieS
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Re: Alzheimer's caregivers, guardians, and conservators

Postby KatieS » Tue Nov 21, 2017 7:25 am

Thank you Nords for sharing your LTC experience. I do hope a better less stressful resolution and peace for you. This only underscores my decision to self insure my mom and the rest of my family.

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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Tue Nov 21, 2017 8:59 am

Tincup wrote:Setting up trusts while they were cognitively well made managing their affairs seamless. I wrote these trusts, but had my father (an attorney) review them. Put almost all their assets in these trusts (this allowed them access to some funds in their bank account, but limited the damage if they did something unwise). They were co-trustees during their life, but no change was needed as their mental capacity diminished. For bank accounts, I had a bank power of attorney (POA) and then had a "pay on death" (POD) to the trust. Coupled this with a durable POA (many financial institutions want their own form), medical POA and living will. Everything was pretty seamless. The key is to get this done while everyone is mentally sound.

I've set this up this for my own affairs. The key is a non-contentious family situation and someone who is truly trustworthy, capable and willing to be the trustee & have the POA. If these requirements can be met, it can work well.

I've heard from a couple people who managed to make a durable POA work (especially with sympathetic bank managers and financial companies) but a revocable living trust seems to be the only foolproof answer.

They used to have a reputation for burdensome paperwork (retitling everything into the trust) and expense, but it looks like both of those are now much easier. We'll only put the "big" things into a RLT (home, rental property, our joint investment account) with our daughter as a contingent trustee. My spouse was skeptical about the admin but now that she's seen what it takes to settle a "simple" estate, she's convinced. We'll get this done next year, which is a couple years earlier than we'd planned.

Julie G wrote:
It's good that Dad had LTC insurance, but we've also just confirmed that he had enough to self-insure. (With his pension and Social Security, he probably had enough assets for another 5-6 years in the care facility before Medicaid.) The insurance company put us caregivers through bureaucratic hell, though, and greatly boosted the stress.

One of my projects will be adding up all of Dad's LTC expenses and then seeing how much my spouse and I would have to set aside to reasonably self-insure. I don't want to subject my spouse to the treatment that I got from Dad's LTC insurance company.

No hurry, Nords, but I'd appreciate learning a little bit about your problems with your Dad's LTC whenever you get a chance. My Uncle has his LTC through Genworth and I've been stunned at some of their tactics to get out of honoring his policy. Even though he's been drawing benefits for several years, they recently CANCELLED his policy because they decided he didn't pay a premium in full four years ago. I've spent hours and hours on the phone to get to the bottom of the problem only to learn that it was a "computer glitch" and may happen again :shock:. It is horrific to see the way he's (we've) been treated after paying dearly for this service.

This first post describes the early months (as I was pursuing a conservator's appointment for Dad) with John Hancock:
http://the-military-guide.com/geriatric-financial-management-update/
(Back then Dad was also about to start chemotherapy for multiple myeloma, which went into remission. But Dad "discovered" that chemotherapy port by his collarbone just about every day for over a year.)

This one explains Hancock's final attempt to reduce their losses:
http://the-military-guide.com/wont-buy-long-term-care-insurance/

It turns out that malfeasance is illegal, but neglect & incompetence is just "Oops."

The real issue is that nobody knows how long they'll be paying for care (my grandfather was in a care facility for nearly 14 years). The caregiver (who's arguing with the insurance company) has to deal with far more stress than the person who bought the policy. But if you could predict how long you had left then maybe you wouldn't buy the insurance in the first place. The newer data from the Center for Retirement Research shows that most people just might not need any insurance, or that it could be more affordable (and profitable) if it was rolled into a rider on a life-insurance policy.

If LTC insurance claims were as "easy" as vehicle insurance then maybe the insurance industry would be a little less evil... or at least more professional.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby floramaria » Tue Nov 21, 2017 9:32 am

Hello, Nords, Thank you for letting us know about your Dad's passing. I deeply appreciate what you have shared about him and about your role as caregiver. Your reflections on your dad's last nine years as the happiest of his life and saying that you didn't enjoy his journey but are glad you all could be there to help and spend time with him is a beautiful sentiment.
My condolences to you and your family.
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IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)

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Re: Alzheimer's caregivers, guardians, and conservators

Postby slacker » Tue Nov 21, 2017 9:32 am

Many thanks Nord for allowing us to hitchhike along on your journey. My heart goes out to all of you caring for friends and family members, have learned so much from you, and admired your grace despite adversity.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby KiminCalifornia » Fri Oct 19, 2018 2:37 pm

Estate Planning:
You can still write a trust and POA/Advance Health Care Directive after someone has been diagnosed as long as you can prove that at the time of the signing they knew what they were doing.

I was on the Board of Directors of the San Diego Alzheimer's Association (never again) and we discovered that 70-75% of the caretakers were dying before the patient. Caretakers don't realize the need to get help with their loved ones. So many people want to take care of their loved ones to the very end and don't realize the stress is killing them, it's their end they are facing. I always recommended several good care facilities and told the clients it was better to put the patient in a little earlier than too late. When you put your loved one in care facility a little earlier than you think, you do them a great service because they can get used to the facility before their ability to adapt is gone.

Caretaking is extremely stressful. My mother died three years before my father. Those three years taught me a lot about caretaking. I had to find the right anti-anxiety drugs for my dad and discovered an old-school one worked the best, Buspar. My dad thought he was stationed aboard a ship (at one of the better care centers in San Diego.) He thought the Captain was upset with him. I asked the owner of the facility to hold a "Captain's Mast" and tell my dad he was doing a great job. My father's anxiety went down considerably. You have to wing it a lot of times. But taking care of my Dad was one of the greatest things I ever did. It hurt to watch him slip away, but we still had some great times and unlike my sibling and mother, I learned to take it one day at a time and not expect too much. I was lucky, my sister and I had decided to not do anything about the progression of the disease. My father's illness had progressed to the point where he was in a nursing facility, in diapers and in a fetal position. He got pneumonia and we agreed not to treat it. My father would never have wanted to last as long as he did. He died and, like many others, I was relieved that he did. I had already mourned his loss for years.
Last edited by KiminCalifornia on Tue Oct 23, 2018 10:33 pm, edited 1 time in total.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby circular » Sat Oct 20, 2018 9:06 am

KiminCalifornia wrote:Setting up the accounts so that all pensions and SSI money is directly deposited is great. A trusted member of the family or close friend should be named on the account (especially the person who obtains the POAs.) I recommend that in the last days of the family member, their accounts be drained of most of the money. Often banks will deny access to an account when there has been a death and most people need that money to pay for funerals and to back the last month of Social Security Benefits (that's right, SSI will require that you repay the last month of SSI.) Military pensions will require that you pay back the last month of the decedent's pension but then they will send you a prorated amount for the days they were still alive in that month. SSI isn't so generous. [Emphasis added]

Kim thank you for sharing your professional knowledge so generously. I'm thinking that if the account where the usable cash is held and direct deposits go in is in joint tenancy, the bank would still allow the other person to transact on the account. Is that right, or do banks even deny access to a joint tenant?

It's been two and a half years since I took over my parent's affairs, but the bank still won't acknowledge my robust POA because the joint tenant on the checking account hasn't had a chance to give them some paperwork. I've just been getting around that the whole time by using online banking and making deposits as "for deposit only" using the phone app or by wire. Stupid bank :lol: I think as long as the POA at least has online access to the account for bill paying that they may not need to drain it?
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 KiminCalifornia » Sat Oct 20, 2018 6:28 pm

Usually, if someone is on the account they can use the account until one jt dies and then it depends on the bank.
Last edited by KiminCalifornia on Tue Oct 23, 2018 10:29 pm, edited 1 time in total.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby Nords » Sat Oct 20, 2018 8:28 pm

Thanks, Kim, this advice is good to know.

KiminCalifornia wrote:Estate Planning:
Make sure the patient (someone who has already been diagnosed) is not named as a trustee or you will have to go through the procedure of getting the patient removed when he is no longer capable of handling the finances and daily living.

You’d hope that most states would have a fairly straightforward process of removing a trustee.

My spouse and I are considering a revocable living trust with just her and our daughter as trustees. That way if I end up dealing with dementia then I’m not a trustee and removal wouldn’t be an issue. Of course if my spouse loses her cognition first then I’d have to have enough of my own assets/income (outside of the RLT) to not care about the possibility of losing control of the trust’s assets. Or I’d really have to trust our daughter.

KiminCalifornia wrote:Setting up the accounts so that all pensions and SSI money is directly deposited is great. A trusted member of the family or close friend should be named on the account (especially the person who obtains the POAs.) I recommend that in the last days of the family member, their accounts be drained of most of the money. Often banks will deny access to an account when there has been a death and most people need that money to pay for funerals and to back the last month of Social Security Benefits (that's right, SSI will require that you repay the last month of SSI.) Military pensions will require that you pay back the last month of the decedent's pension but then they will send you a prorated amount for the days they were still alive in that month. SSI isn't so generous.

KiminCalifornia wrote:Usually, if someone is on the account they can use the account until one jt dies and then it depends on the bank. Sometimes they put a temporary hold on the money until they are sure that they are on legal footing. I simply avoided all of that by telling my clients to remove the money when they thought the end was near. I used to advise them to keep enough money in the account to keep it open so that monthly deposits would still be deposited. It's strange, but I've seen different banks do different things when it comes to trusts and dead trustors/trustees (the account should be in the name of the trust if you have one.) A caretaker or trusted child, family member, or friend, should be the trustee by the time the loved one is dying. After seeing banks do some absolutely crazy things, I don't trust them as far as I can throw their President.

Dad died on 18 November 2017 and Social Security never requested repayment of their 3 November deposit to his checking account. If that’s a problem then I hope I’d be notified by now.

When my father died (and before I notified his his bank, ANB Bank in Colorado), I transferred all but $1 out of his checking account. In retrospect, I wish I’d tried to transfer that dollar out too.

When I eventually notified ANB Bank of Dad’s death (and forwarded the death certificate), they locked me out of the account... and then they wouldn’t release the dollar. Dad had designated every other account and asset as “Payable On Death” or “Transfer On Death” except for that checking account, and as conservator I wasn’t authorized to change his designation. ANB insisted that I had to have the probate court issue the letter of designation as personal representative (as named in the will) and then submit the letter and the will to ANB. At that point they would’ve issued two checks (50 cents each) to my brother and me. They probably would’ve mailed them in envelopes with 49-cent stamps.

I’d disbursed the rest of my father’s estate as a conservator & heir, not as a personal representative (executor), and I wasn’t going to jump through the probate-court hoops for a buck. ANB wouldn’t budge. It’s not about the dollar, it’s about deviating from a policy which involves potential liability.

To add insult to injury, ANB is still sending monthly statements. Since I'm locked out of the account, I can't turn off the statements.
That’ll probably continue for another six or seven years until they can turn the $1 (plus interest!) over to the state as abandoned property.

KiminCalifornia wrote:I was on the Board of Directors of the San Diego Alzheimer's Association (never again) and we discovered that 70-75% of the caretakers were dying before the patient.

Can you discuss the “never again” part? Never again on that particular board, or never again on any Alzheimer’s board, or never again on any board?

Does anyone have any statistics, references, or links on caregivers dying before their patients? I understand the issues but I’ve never seen any reported numbers.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby KiminCalifornia » Tue Oct 23, 2018 11:00 pm

Alzheimer's Association board in my city: When a position came up on the board, I nominated a very qualified man who was CEO of a major Alzheimer's Care Facility group. He always helped the Association and was a big donor. Not only that, he was level-headed and a good guy. The Managing Director of the Association asked me to withdraw his nomination because they had promised the position under the table (without running it by the entire board) to a neurologist who was doing Alzheimer's research. Not only did they turn down a good guy who was generous with his time and money (and had asked me to nominate him,) the selection of the new Board member was done with a handshake behind the back of the board. That wasn't the only politics I found distasteful, but I soon quit. I understood there would be politics, but it was so underhanded, I had to quit.

The statistics came from an informal poll we did of walk-ins and donors in my city.
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Re: Alzheimer's caregivers, guardians, and conservators

Postby circular » Fri Oct 26, 2018 5:39 pm

So some of you may have heard about the 'virtual dementia experience' or 'virtual dementia tour'. It's often recommended that caregivers go to one of these, when it's offered locally, to get an idea what it's like to have dementia. They modify your sensory input in multiple ways, and then before entering a room with various objects, you're given instructions what to do when you're in there, tasks relating to clothes in particular.

As a caregiver I've been meaning to do this for a couple years, so I had it on my calendar for this week, something to check off a list and to walk away with a better understanding of what's it's like to have serious memory issues. Now that I've done it, I don't think I should have. Like learning one's apoe4 status, there's no going back. When I left the experience I stopped by a landscaping place that holds good memories for me, but I found that the confusion the experience triggered in my brain continued to a degree, not severely, but for instance I had to concentrate on where the walkway was going that I was walking on, and placing my feet on the walkway, something that should be automatic while enjoying the plants. So my first caution is if you do this, don't plan anything right after. Give yourself time to integrate what you've just experienced and return to Your normal. Just go home or to a friend's house, for example, to process it.

The other caution is if you have any PTSD think hard before following anyone's advice to go to the virtual dementia tour. I have some active PTSD, albeit mild for the world of PTSD, stemming from something that happened this year (thankfully not directly to me) but far too close for comfort. I found the anxiety and confusion of experiencing an approximation of dementia and what lies ahead for my parent, layered onto my new PTSD baseline for stress, was too much. While I've had anxiety in life, I've never had a panic attack, and I've had two today.

Some day in the future I may be glad I did the virtual tour, it may even motivate me to be disciplined on my quest to prevent or delay this horrible disease, but today I wish I hadn't gone. I think in my case I was better off not experiencing that. I was already a loving and patient caregiver, so I didn't need this hit of devastating and disorienting reality why I should be. I plan to call the Alzheimer's Association and tell them to get the word out to the people who run these that they should warn anyone with PTSD that it could exacerbate their symptoms. They did give fair warning about strobe lights and I skipped that part, but I underestimated the effect of the other modifications. I'm even wondering if it's particularly bad for e4 brains in some way, sort of feeding the toxic stress circuits we try to damp down.

Even without PTSD, don't feel like you have to go to these. It is helpful in many ways, but it's not easy. Try to assess whether you're in a strong enough place for it. That extra awareness was the last thing I needed to be dealing with. Why didn't I see that coming :( I can confidently say that right now a little alcohol would be medicinal for this e4 that raaaaaaaaarely ever has any.
ApoE 3/4 > Thanks in advance for any responses made to my posts.


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