When the rubber hits the road [Progressive Dementia thread with merged updates]

Non-investing personal finance issues including insurance, credit, real estate, taxes, employment and legal issues such as trusts and wills
therealityhits
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When the rubber hits the road [Progressive Dementia thread with merged updates]

Post by therealityhits » Wed Jun 18, 2014 11:40 am

[I have merged several separate updates into this original thread. Please check posting dates before responding. - admin alex]

I don't know if this is the right section, but here goes.

To start off with, this is a secondary ID approved by the moderators. As you read further into this message you will see why.

I used to participate regularly in this forum and some of you would recognize my main ID and know exactly who I am. At this time, I wish to keep it a secret. Well anyway, about two years ago (?) my participation tapered off. It tapered off in a lot of other things. Other things happened. I quit reading books and magazines; my short term memory went to crap; etc.

Over the years, there have been a lot of discussions about what to do once you start to lose your mental sharpness. Most of it has been theoretical. In my case it no longer is. You see, I am relatively young, 61, and have recently been diagnosed with Progressive Dementia. Now this is not an agreed upon diagnosis. One doctor feels my mental cloudiness (my term, not his) is due to the amount of drugs I am taking, another feels it is a classic case of Progressive Dementia.

I am putting my money on the diagnosis of Progressive Dementia. I cut back on a lot of the drugs and the cloudiness has not disappeared (though I finally did complete my first book in 6 months.) and in all honesty problems began before the drugs.

So the purpose of this discussion, is to talk about the reality of handling investment, taxes, etc, once you really become less sharp.

Now I know there will be lot of gee I am sorry post, but please known of that. What is, is. My goal is what you in actuality versus what you would do think you will do once the rubber hits the road versus what you think you will do.

The reality hits

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pjstack
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Re: when the rubber hits the road

Post by pjstack » Wed Jun 18, 2014 12:48 pm

In keeping with what you propose as the subject of the discussion, I offer the following:

I have simplified my "portfolio" to two funds, a balanced 60/40 fund and the Total Stock market fund.
I have set up an automatic monthly investment amount taken from my military pension.

I have written (over the years) a notebook that outlines ALL my financial situation, not just investing (which is very simple now) but bank info, insurance info, transfer on death info, house title, car titles, etc.

Due to some vaguely diagnosed neurological malfunction I have become physically frail in the last ten years. The same thing may occur mentally, who knows?

I think I have prepared enough information for my wife to know where everything is and what to do if I die physically or mentally.

Best wishes.
pjstack

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Re: when the rubber hits the road

Post by Random Poster » Wed Jun 18, 2014 1:12 pm

Not sure how to respond to the query, but perhaps for those concerned about such matters, putting a durable power of attorney in place now and going over all of one's investments, tax filings, and financial desires with the chosen attorney-in-fact for a number of years might assist in reducing the stress and uncertainty regarding how the investments are to be handled.

Perhaps a power of attorney isn't the best document to use to address this type of situation, but I suppose that it is better than nothing and, from what I can gather, most states have a standard POA form that virtually anyone can use and complete without the need for much legal guidance.

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Re: when the rubber hits the road

Post by Gnirk » Wed Jun 18, 2014 3:08 pm

As others have suggested, the first thing to do, if not already done, is to draw up a Durable Power of Attorney, one for healthcare, and one for financial. In each, be sure to name both a primary and a secondary POA. The reason I say this is because my mother named only me as financial DPOA, which left the question of who would manage her affairs if something happened to me? By the time she gave me her DPOA, she couldn't change it because she was no longer able to make legal decisions. Her DPOA granted me the power to set up a revocable living trust, which I did, so that I could name successor trustees. Mom is 89 and has had dementia for over ten years, and I am 70 and have suffered a stroke, so the possibility of needing someone else as trustee in our case is realistic.

If you do not have trusted family members or friends whom you trust to be your attorney-in-fact, or trustee, there are professional guardians who can do so, should it become necessary.

Even though you are not elderly, you might want to visit a Certified Elder Law Attorney who can advise you on the best steps to take, and help set up a plan.

Simplify your investments as much as possible.

As for what I have done?
I have all legal documents completed, with alternates named for DPOA.
I am simplifying my investment portfolio.
I have listed all my accounts: medicare advantage plan, brokerage, banks, credit unions, credit cards, bills and how they are paid. I included the institution name, address, and phone number. The person to contact, if any, for each of them. The account numbers. Also the same for my very small pension.

If my husband is unable to take care of things, I have instructed my alternates to meet with our CPA for taxes, and consult with our attorney if needed.

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Re: when the rubber hits the road

Post by Zabar » Wed Jun 18, 2014 3:57 pm

I think that there are two parallel tracks you should be pursuing. As mentioned above, you should set up DPAs and make sure that your investment policy statement and your healthcare-related wishes are clear to anyone who is involved in your healthcare and/or has access to your funds.

As a psychologist, I've seen several problems, including drug side-effects and depression, presenting with the same symptoms as early onset dementia. Talk to your physician about getting a referral to a neuropsychologist who's experienced at teasing these things out. An evaluation and medication review by a neurologist would be appropriate as well. Good luck!

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Re: when the rubber hits the road

Post by letsgobobby » Wed Jun 18, 2014 4:01 pm

you are right to seek several opinions in your case, especially from a neuropsychiatrist. You are young, but not too young, for dementia. If Alzheimer's, do the florbetapir scan which will tell you for sure. If the rule out is something else, it may not be as helpful.

I wrote in the other thread that a guardian is the way to go. Start interviewing one, now. Invite your lawyer and you and guardian to meet together, several times. Make sure they can work with each other. That is my recommendation if you do not have trustworthy family/friends (and much younger than you) to handle this.

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Re: when the rubber hits the road

Post by LadyGeek » Wed Jun 18, 2014 4:31 pm

This thread is now in the Personal Finance (Not Investing) (financial planning).

I also would like to confirm that the OP's request for a 2nd username was indeed approved by the moderators.

This is a sensitive issue, but please try to avoid giving medical advice (it's off-topic for a lot of reasons).
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staythecourse
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Re: when the rubber hits the road

Post by staythecourse » Wed Jun 18, 2014 4:45 pm

Great question.

This is EASILY the most important worry I personally have when I age.

I agree with needing to address Durable Power of Attorneys pronto. On the finance side: If you have someone you trust and can "run the show" in the near future and beyond then great. Start talking to him/ her about where your money is, what liabilities you have now and in the short run, investing philosophy, etc... If not, I would STRONGLY suggest hiring a trusted FA to do it for you. Mr. Swedroe or Mr. Ferri I am sure would be useful to talk to and/ or get some advice. Just keep in mind if you are male and only 61 now your spouse (if you are married) may need help with the day to day issues for many years going forward as women live ?5+ years longer then men.

This is an area that I would have no issues dropping ALL the money into Wellington or balanced fund as appropriate by stock/ bond needs and just having the dividends just left in money market.

Good luck.

p.s. I am sure you are already thinking about it, but you are going to have to re-eval. your portfolio to this HUGE possible change in "need" with high likelihood of needing home care at some point in the future.
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Re: when the rubber hits the road

Post by ddunca1944 » Wed Jun 18, 2014 4:50 pm

I would like to express my appreciation for bringing up a difficult, but too often very pertinent issue.

I think about this possibility a great deal due to my own family history.

As the family financial manager I have several goals:

Complete estate planning (wills, power of attorney, health care directives, letter of instruction to executor)

Simplify both the investments and the day to day finances as much as I possibly can Retirement accounts are divided between two Vanguard balanced funds, both low cost, RMD's are set to be automatically figured and distributed, regular bills are set to be paid automatically via credit card, credit card set to be automatically paid from checking account, which is automatically replenished monthly with pension, SS, and RMD's.

Create a monthly "Financial To Do" sheet that is mostly confirming the above transactions are posted

Find and designate someone who could take over if both my spouse and I become incapable

The first three are done but I still need to do the 4th. Am considering a nephew but need to discuss with him. Am also planning to look into the possibility of a CCRC (Continuing Care Retirement Community)

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Re: when the rubber hits the road

Post by Valuethinker » Wed Jun 18, 2014 4:51 pm

therealityhits wrote:I don't know if this is the right section, but here goes.

To start off with, this is a secondary ID approved by the moderators. As you read further into this message you will see why.

I used to participate regularly in this forum and some of you would recognize my main ID and know exactly who I am. At this time, I wish to keep it a secret. Well anyway, about two years ago (?) my participation tapered off. It tapered off in a lot of other things. Other things happened. I quit reading books and magazines; my short term memory went to crap; etc.

Over the years, there have been a lot of discussions about what to do once you start to lose your mental sharpness. Most of it has been theoretical. In my case it no longer is. You see, I am relatively young, 61, and have recently been diagnosed with Progressive Dementia. Now this is not an agreed upon diagnosis. One doctor feels my mental cloudiness (my term, not his) is due to the amount of drugs I am taking, another feels it is a classic case of Progressive Dementia.

I am putting my money on the diagnosis of Progressive Dementia. I cut back on a lot of the drugs and the cloudiness has not disappeared (though I finally did complete my first book in 6 months.) and in all honesty problems began before the drugs.

So the purpose of this discussion, is to talk about the reality of handling investment, taxes, etc, once you really become less sharp.

Now I know there will be lot of gee I am sorry post, but please known of that. What is, is. My goal is what you in actuality versus what you would do think you will do once the rubber hits the road versus what you think you will do.

The reality hits
I am sorry for what you are facing. There are new drugs out there in trials, but, it seems, no real solutions as yet. One thinks of Terry Pratchett (something similar to your situation).

Simplify your portfolio aggressively. Balanced funds or simply the 3 fund portfolio. KISS. Don't be afraid to pay some tax to achieve this goal.

Try to involve your spouse or partner (if you have one) in investment decisions. So they know what to do in general principle. If you don't it gets harder, but you do have to have Powers of Attorney in place.

If you can get a clear diagnosis, you will qualify for an 'impaired life' annuity (maybe). That pays a significantly higher level of income, and with a survivor option it might be wise to annuitize *some* of your savings.

As mental faculties decline then stability of daily life and location becomes increasingly important. If you are not sure you can live on in your current arrangements long term, then it might be worth grasping that nettle now.

My father was killed in an accident. We had no access to his passwords or accounts- -didn't know where stuff was on his computer. It was a real mess. Try to write all that stuff down, where a family member can find it.

Anticipating when you will need cash is hard, but again a KISS portfolio if you can will help you or whoever has to make those decisions.

Once again I am sorry to hear about your situation and wish you the best and Godspeed.

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Re: when the rubber hits the road

Post by Fallible » Wed Jun 18, 2014 4:58 pm

I thought it would be helpful to pull together what I see as among the more urgent recommendations posted here thus far:

1) elder law attorney (guardianship, POA, etc.)
2) additional medical evaluation (your doctor's referral to a neuropsychologist, neurologist)

I also would recommend having a family member(s) or close friends be with you during these appointments. You may already have such support, but I thought I should mention it since you didn't.

I base my comments on my family's experience caring for older relatives with dementia. The best medical and legal team we could assemble were keys to dealing with the reality.

I wish you the best of luck.
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Re: when the rubber hits the road

Post by hicabob » Wed Jun 18, 2014 5:12 pm

staythecourse wrote:Great question.

This is EASILY the most important worry I personally have when I age.

I agree with needing to address Durable Power of Attorneys pronto. On the finance side: If you have someone you trust and can "run the show" in the near future and beyond then great. Start talking to him/ her about where your money is, what liabilities you have now and in the short run, investing philosophy, etc... If not, I would STRONGLY suggest hiring a trusted FA to do it for you. Mr. Swedroe or Mr. Ferri I am sure would be useful to talk to and/ or get some advice. Just keep in mind if you are male and only 61 now your spouse (if you are married) may need help with the day to day issues for many years going forward as women live ?5+ years longer then men.

This is an area that I would have no issues dropping ALL the money into Wellington or balanced fund as appropriate by stock/ bond needs and just having the dividends just left in money market.

Good luck.

p.s. I am sure you are already thinking about it, but you are going to have to re-eval. your portfolio to this HUGE possible change in "need" with high likelihood of needing home care at some point in the future.
I like the Wellington or equivalent suggestion. One of my kids has been indoctrinated and trained to be a boglehead which will be my backup.

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Re: when the rubber hits the road

Post by MP1233 » Wed Jun 18, 2014 5:19 pm

I take this topic very seriously, because the reality is that we will all become disabled eventually unless you are one of the "lucky" ones who dies suddenly. Even then, someone will have to come along and try to make sense of your financial situation. I have always been interested in personal finance, but that is not the case with my wife. I am four years older than her, so it is quite likely that she will outlive me by ten years or more. I am currently educating our two sons to help her with her finances when I am gone. We are fortunate that they are both well grounded sensible people. If we did not have them, I am not sure what we would do. As with most Bogleheads, I really hate the idea of paying a professional 25% of annual withdrawals.

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Re: when the rubber hits the road

Post by VictoriaF » Wed Jun 18, 2014 5:24 pm

I am very sorry about your condition and hope that it improves as much as possible. Best of luck!

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Re: when the rubber hits the road

Post by BlueEars » Wed Jun 18, 2014 11:11 pm

therealityhits wrote:...(snip)...
What is, is. My goal is what you in actuality versus what you would do think you will do once the rubber hits the road versus what you think you will do.

The reality hits
I take it that you want concrete actions that we would do or have done.

Here is what I have done:
1) Set up a revocable living trust that handles the legal side of things.
2) Attorney also did the other medical and power of attorney stuff. Important but boring to me.
3) The trust specifies Vanguard as the financial firm to do the investment chores along with the executor we have named.
Note: Vanguard has a separate wing of the firm devoted to managing trust type situations. One should contact them for details and specifics that must be put into the trust document. They will want copies of the trust document.
4) I wrote out a letter of current thoughts on the best way for my wife to handle affairs and manage the money. But times change (wars, depressions, etc.) and so I have made the letter pretty general.
5) I've put copies of key documents in our safe deposit box and educated wife on how to proceed to follow the trail. She is not very interested in financial matters except to be an enthusiastic cheerleader for me, bless her heart. I even included some photos of where a few items are located in our house.

In your case I would think you want to actually implement what I've only written about in #4 above. As others have pointed out above, a simple portfolio is best. I'm always impressed how the Wellington and Wellesley funds have managed to do well in various markets over extended periods of times.

Best of wishes to you!!!

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Re: when the rubber hits the road

Post by gtmn » Thu Jun 19, 2014 12:34 am

I think it will be important to notice how your decision making and communicating change as symptoms fluctuate over the short term and trend over the long term. You could keep a brief journal about how you do on good days vs. bad days. For example, on good days you may make better decisions than on bad days. Another example, on good days you may be more assertive and on bad days you may be more susceptible to the influence of others. If you recognize it's a bad day, maybe your best decision is to postpone the decision until you get a good day or have a chance to discuss it with someone you trust. By having a journal to look back on, you may notice patterns in your decision making and how it is changing over time.

As for investments, I would explain to my spouse why you chose this investment plan and constructed this portfolio so they're prepared to maintain the plan, and so that the plan reflects their risk profile and needs. If my wife were to take over our portfolio today, the risk level would skyrocket because she likes individual stocks and hasn't read a single Bogle book.

I wish you the best!

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Re: when the rubber hits the road

Post by plannerman » Thu Jun 19, 2014 8:12 am

If you haven't already done so, and if it's not too late, you should consider seeking admission to a Continuing Care Retirement Community with facilities for long-term dementia care.
Otherwise, the burden on your care providers will be overwhelming.

plannerman

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Re: when the rubber hits the road

Post by LadyGeek » Thu Jun 19, 2014 2:12 pm

BlueEars wrote:5) I've put copies of key documents in our safe deposit box and educated wife on how to proceed to follow the trail. She is not very interested in financial matters except to be an enthusiastic cheerleader for me, bless her heart. I even included some photos of where a few items are located in our house.
I'd like to point out a possible roadblock with a safe deposit box. If the owner passes, it will be quite a while to retrieve key documents - unless it's a will. Keeping copies in the house is a good idea.

In PA, safe deposit boxes are locked down upon the death of an owner (unless you are the spouse as co-owner). Here's the official guidance: Pennsylvania Inheritance Tax and Safe Deposit Boxes

The wiki has tax website links for each state with an estate or inheritance tax: Estate and inheritance tax (State estate and inheritance taxes)
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Re: when the rubber hits the road

Post by therealityhits » Thu Jun 19, 2014 2:19 pm

I want to thank everybody for their concerns and suggestions. They were most helpful. I am currently revising my will and estate plan, probably for the last time. I am making plans to talk to an eldercare attorney to see what else needs to be done

I was always much smarter than the average bear, now I am just a little bit smarter. I am far from incompetent now, but things are going to get worse. My short term memory is semi-shot. Yesterday I went out to lunch with my wife. Three hours later, I had no idea as to where we had gone. If I am asked to do X and somehow get distracted, I forget to do X. I can still acquire new information provided it is in a subject I have previous knowledge about. Acquiring new information in other areas is difficult at best

I already have a trust company involved managing our assets. (We are worth $6 million plus). My major goal right now is to make things automatic for my spouse. She had a small stroke a few years back and is no longer good with numbers. I am eliminating the problem investments, e.g., Master Limited Partnerships. I don't know what to do about the rental condos. They are just too damn profitable at this point.

I am deathly afraid of becoming truly incompetent!

The reality hits

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Re: when the rubber hits the road

Post by dumbbunny » Thu Jun 19, 2014 2:51 pm

I hope that you get your house in order and that you can live out your life with dignity.
This situation reminds me to be thankful for what I have and to be thankful for what I don't have.
“It’s the curse of old men to realize that in the end we control nothing." "Homeland" episode, "Gerontion"

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When the rubber his the road - an update

Post by therealityhits » Wed Jul 29, 2015 4:37 pm

[This update is from July 29, 2015. Please check posting dates before responding. - admin alex]

When the Rubber Hits the Road

I recently got a private email and I decided to update everyone as to my condition.

As I might have stated in my earlier message last yaer, there was always some debate as to exactly what I had. Well I am now 99% sure I have a dementia of some form. About 6 months ago, I joined an on-line telephone support group for early dementia sufferers run by the Alzheimer Association. My symptoms and progression matches the other participants symptoms.

I still don’t drive and recently got a disable bus pass for my town. I have learned you do not tell anyone you have a dementia disease because once they know they treat you differently and your opinion about anything isn’t worth sh*t.

My ability to acquire new information is still very poor and getting worse. Unless I have a hook to grab hold of, it is a semi-waste of time. Take reading of mystery books. I used to enjoy it. Today unless it is based upon a character I know before I find them too difficult to follow. Thus a Walt Longmire or Jack Reacher mystery is still enjoyable but not a other mysteries. For the last two years, I have participated in an adult discussion groups called the great books run the OLLI (Osher Lifelong Learning Institute). Just got the list for the new season and the material looks very complex.

Even if I have a hook, acquiring technical information can be very difficult. For a few years, I was a volunteer tax preparer for the AARP. Last year, I could not even pass the most basic test.

A number of responders suggested I do something regarding password access to accounts, names of professionals I use, etc. I have done so. I recently came across a 22-page Personal Inventory Manager which I am using for that purpose.

As stated in my last series of messages, I am using a full service money management firm, US Trust Company of New York, rather than simplify my portfolio (2-3 Vanguard Funds) or use Vanguard Trust Company. USTCNY is 10X as expensive as a self-managed Vanguard portfolio and 3X as using VTC. Why I chose to use USTCNY is open to debate. Perhaps (a) it is because I have a long working relationship with them involving other trusts, (b) my wife has had two strokes and she feels she would be incapable of self-management, (c) my wife and I feel our daughter has her own life to live or (d) maybe because USTCNY would manage non traditional assets that my spouse or VTC would not/could not. For example, I own some rental properties. USTCNY would take over management if asked. VTC would not touch any asset other than publicly traded stocks or mutual funds. Finally USTCNY would be intimately involved in the probate of my estate. Any other solution, my spouse would have to do it alone.

As part of the disease I have realized I am no longer concerned with my portfolio or the assets contained therein. Six years ago, I would look at the assets every week. Two years ago, maybe once a month. Now I don’t look at them at all..

A year ago there was some discussion on how to fund some charitable bequests. A fair number thought I was giving away money I might need at a later date. After talking it over with my “advisors” I have come to agree with they naysayers. What I am doing instead is giving away money in my annuities upon the death of the survivor of me and or my wife. In other words, we will have no need for it when it goes.

For those of you who say why not leave it to my child, the answer is simple. She is already independent wealthy and she will inherit over 50% of our assets. These charities mean a lot to us.

We have started to travel a lot more. This year we are going to take four separate trips culminated by a month in Hawaii.

I am starting to seriously look at my own mortality. I figure I have between 5 and 7 good years before I am in a truly bad place. I told the support group that I would take try and take matters into my own hands before it got that bad. The group facilitator took umbrage with that feeling. But then every participant of the group expressed identical feelings. It is one thing to lose control of the body, quite another to lose your identity.

I hope the rest of you are doing well and never find yourself in my position. Any questions, just ask.

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Re: When the rubber his the road - an update

Post by easye418 » Wed Jul 29, 2015 4:45 pm

First of all, terrible to hear about your condition.
Second, it is disturbing that you are admitting that you will take your own life if it gets to bad. It's difficult to put myself in your shoes, but it is your choice in the end.
Third, I assume you have research and looked to all ends of the Earth for some sort of remedy or something to slow the condition down?
Fourth, would you mind sharing your age?

Best of luck. It looks like you will be able to spend a good chunk of time with your loved ones and have plenty of time for preparation and everything you want to get done. Most of all, relax and enjoy the time you have and those vacations.

It puts things into perspective for me in my 20's is that life might not always go your way so enjoy each and every day you have on this Earth to the fullest.
Last edited by easye418 on Wed Jul 29, 2015 4:49 pm, edited 2 times in total.

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BL
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Re: When the rubber his the road - an update

Post by BL » Wed Jul 29, 2015 4:47 pm

Thank you for sharing some of this difficult journey. Our best to you.

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Re: When the rubber his the road - an update

Post by unclescrooge » Wed Jul 29, 2015 4:52 pm

sorry to hear this.

Is there anything you can do to slow this down?

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Re: When the rubber his the road - an update

Post by Levett » Wed Jul 29, 2015 4:54 pm

You are an extraordinarily courageous person for laying things out so clearly and bluntly.

Please don't overlook the fact that you write clearly and compellingly. A lot is still working.

We can all learn a valuable lesson with your help: we are not nearly as invulnerable as we (pretend) to think.

I hope you keep posting, as I will be looking for those posts.

What you have said is far more valuable to me than five-factor (or is it ten?) or tilting or whatever is the flavor of the day.

You are reality.

My sincere best wishes and you have my unqualified admiration.

Lev

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Re: When the rubber his the road - an update

Post by Wildebeest » Wed Jul 29, 2015 5:20 pm

Therealityhits

You are inspiring. I hope that when my rubber hits the road, I will have your attitude.

Levett says it best.

Thanks for the update and I also will look forward to your postings.


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Re: When the rubber his the road - an update

Post by PartIrish » Wed Jul 29, 2015 5:25 pm

I am sorry to hear of the health challenges you are facing, and wish you the best going forward. There is some promising news on the horizon, which came out of the recent annual conference on Alzheimer's that took place last week. [Medical news and links related to the Alzheimer's conference removed by admin LadyGeek]

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Re: When the rubber his the road - an update

Post by Hikes_With_Dogs » Wed Jul 29, 2015 6:16 pm

I am so sorry for your condition. Thank you for sharing. You a brave man and I wish you the best of luck.

How is your family taking the news?

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Re: When the rubber his the road - an update

Post by blueblock » Wed Jul 29, 2015 6:59 pm

I'm sorry for your diagnosis, and want to thank you for your candor here. It is valuable news and much appreciated.

My partner and I are united in a commitment to help the other shuffle the mortal coil, legally, if something like this happens to us. The question, of course, is when, given that there will be good days and bad days.

I wish you many, many good days to come.

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Re: When the rubber his the road - an update

Post by Fallible » Wed Jul 29, 2015 7:33 pm

I'm very sorry to learn of your condition. Your acceptance of the diagnosis and understanding of the disease, along with the preparation and other steps you've taken thus far to deal with it, will greatly ease things for you and your family. And now enjoy those vacation trips!
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Re: when the rubber hits the road [updated]

Post by LadyGeek » Wed Jul 29, 2015 7:42 pm

therealityhits - I merged your update back into the original thread, as it's important that everyone see this in its full context. I also retitled the thread.

I'm familiar with dementia, and admire your fortitude to post here.
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Re: when the rubber hits the road [updated]

Post by LadyGeek » Wed Jul 29, 2015 7:52 pm

I removed some recent medical news that came out of the recent Alzheimer's conference. As noted earlier, please do not discuss any medical issues.
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Re: when the rubber hits the road [updated]

Post by littlebird » Wed Jul 29, 2015 9:46 pm

I know this may be the most painful bit of all, but, especially with a wife who has had 2 strokes, if it were me I would start visiting assisted living facilities, especially those with attached skilled nursing. There may come a time when you or she can no longer be cared for at home and it may happen very suddenly. Best that you've picked out the nicest and most suitable places(s) possible by yourselves and make sure that those who will be assisting you know which these places are. It may even be necessary to leave a deposit at some of the best places. And it will be a burden lifted from your daughter's shoulders as well as from your's and your wife's.

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Re: when the rubber hits the road [updated]

Post by letsgobobby » Wed Jul 29, 2015 10:51 pm

Thanks for the update, and for your willingness to disclose so much.

This is such an important topic. Lifetime incidence rates will explain why.

By the time we are 85, if we are lucky enough to have reached 85, 40% of us will have dementia.

For some that may seem light years away. But consider that we spend a lot of Boglehead bandwidth discussing 2-4% SWRs, which are necessary only to sustain 30-40 year retirements, which in most cases are only relevant if we live to at least 85.

In other words: planning for an SWR of 4% or less, without planning to develop dementia, is internally inconsistent.

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An Update on my condition - dementia is not fun

Post by therealityhits » Sun Apr 10, 2016 3:56 pm

[This update is from April 10, 2016. I'm merging separate posts into one thread. Please check posting dates before responding. - admin alex]

Its The Reality Hits here. Just a short update about my condition and my investments.

My progression is SLOW yet relentless. The doctors are no longer sure what I have. There is no doubt my short term memory is getting worse and my long-term memory is starting to be affected. But they feel the progression is too slow. So the diagnosis has to be revised, but they don't know to call it

I have an extremely bad back and recently had my second major back operation. As a result, I am tired all the time and end up taking one or two naps a day. For a short while I was constantly losing my balance. but it was later deemed to be caused by a new medication.

A major development is that I kept forgetting to take my morning and afternoon pills. I would get busy and just forget them. I then found a reminder device that says in a loud voice “it is time to take your morning/afternoon/etc pills.” It goes on for a minute or two unless you press an acknowledgement button.

My wife and I are redoing our condo to make it more livable for us. The first thing I did was add a couple of grab bars outside the bathroom area.When we got the total estimate we were shocked how high it was until we realized it was less than 10% of our 2015 income.

I may have mentioned this earlier but I no longer give money to a charity unless it is already on my Vanguard Charitable Gift Fund list. And to make sure I don’t do it more than once a year, every charity is on a recurring basis. All I have to do is transfer enough money to fund the annual gifts every year.

I gave up doing my own tax return a while back, but I continued to do a shadow return using TurboTax. This year there was a large difference. Turns out I “forgot” to include our social security income in the return. (We get about $42k is SS income!)

I still use US Trust Company of New York to manage our assets, except for the I-Bonds and our Variable Annuities (held at Vanguard). UST charges me about 1%.

Right now I am in negotiations with UST for a 20% discount. Over 25 years ago, my parents and all of my siblings signed a deal with XYZ trust company that gave us a flat 20% discount for all accounts over $2 million. Of course I lost my copy of the letter and none of my siblings could find their copy. Anyways XYZ got bought out by ABC which in turn got bought by DEF and by the time you get to the last purchaser, you are at the Bank of America which happens to own US Trust. Last year, a copy of the letter was finally found. I have asked UST to honor the agreement. They haven’t yet, but I think they will.

Additionally, for the past two-three years UST and I had some heated words about its refusal to buy any Vanguard funds. Finally learned why: they were not on the approved list of funds. Years ago when I first started with UST and it was independent, its advisors could purchase anything. No one bothered to tell me about the changes in rules. Luckily I learned I could get around this prohibition by issuing explicit instructions to buy them. So I did. While most of my holdings are individual stocks, UST has bought me a number of Vanguard ETFs and MFs this past year. I still pay its management fee, and I also pay Vanguard’s fee but it still a heck of a lot better than some of the mutual funds UST had previously bought.

I used to know exactly what each company I held stock in did. Now I still know what most of them due, but sometimes, I have to look them up. Because of this I still trying to enforce my “dividend” rule. Each company I am invested in must (1) have a history of increasing its dividend every year and the dividend when purchased must be more than the UST fee for holding it.

I have also issue instructions to stay away from certain investment classes such as Master Limited Partnerships. They drove me crazy at tax time and I could no longer understand their investment rationale.

Finally, I have decided to liquidate some of our fine art. We own a number of fine prints from Grant Wood, Thomas Hart Benton, etc.. Some are worth $200, while others have sold at auction from $10-20k. The good ones have doubled in pr I offered them to my only child but she said no. I am selling them now to simplify any problems my wife (she has had two minor strokes) might face when I die.

Any questions just ask.

TRH

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Re: An Update on my condition - dementia is not fun

Post by Gnirk » Sun Apr 10, 2016 5:27 pm

I'm very sorry to hear about your circumstances, and I hope the docs can give you a diagnosis soon. That will make it somewhat easier to find the appropriate treatment. I have no questions; it sounds like you are taking the appropriate steps regarding your personal safety and finances. I hope you have a trusted relative (daughter perhaps?) who is aware of your financials and how you want them invested, and have durable powers of attorney for medical and financial in order.

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Re: An Update on my condition - dementia is not fun

Post by TerryDMillerMBA » Sun Apr 10, 2016 5:57 pm

I just had an uncle die that I helped take care of (a little more than 24 hours ago), and one of his conditions was dementia, in addition to his schizophrenia, diabetic/pancreatic issues, etc.

He didn't have the income to hire someone, so my mother and I assisted him for ten years. He was my and my brother's nanny, for lack of a better word, for the first 6-1/2 years of my life. While the situation was sometimes frustrating, how can I begrudge paying back?

Well, the reason I bring the story up is this: unlike my dear uncle, you have the income to hire someone to assist you and your wife. Your quality of life will increase exponentially.

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Re: An Update on my condition - dementia is not fun

Post by celia » Mon Apr 11, 2016 3:58 am

therealityhits wrote:Its The Reality Hits here. Just a short update about my condition and my investments.

My progression is SLOW yet relentless. The doctors are no longer sure what I have.
I can see why the doctors are confused. Your writing is very clear and makes lots of sense. From what you just wrote, it does not appear you have memory problems, to me. :)
A major development is that I kept forgetting to take my morning and afternoon pills. I would get busy and just forget them. I then found a reminder device that says in a loud voice “it is time to take your morning/afternoon/etc pills.” It goes on for a minute or two unless you press an acknowledgement button.
Can you tell us more about this device? What is it called? Where did you get it?
Can you customize the message(s)?
Do you like having it?
Would it work for a family/couple if 2 or more people needed reminders for meds?
Can it be used to remind you of other things, like to call someone everyday (so they know you are still ok) or to take the dog for a walk or to dump the trash?
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Re: An Update on my condition - dementia is not fun

Post by Yukon » Mon Apr 11, 2016 4:14 am

Have you checked drugs.com to determine if memory loss is a side effect of any of your medications?
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Re: An Update on my condition - dementia is not fun

Post by mxs » Mon Apr 11, 2016 7:16 am

That device's function could be set up on a cell phone or other device with a calendar as a recurring daily event (or multiple events twice a day). Just another option available.

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Re: An Update on my condition - dementia is not fun

Post by barber » Mon Apr 11, 2016 7:54 am

Thanks for the update. So glad things are better than anticipated originally. I sent you the email awhile back asking for an update and I am thankful that you were able to respond. Please when able keep us posted.

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Re: An Update on my condition - dementia is not fun

Post by nisiprius » Mon Apr 11, 2016 8:04 am

Thanks for posting, I'm so glad you did. I hope that if and when I get dementia I will be aware of my condition, and I hope that I will be able to discuss it as coherently and articulately as you do. Best of luck.
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Re: An Update on my condition - dementia is not fun

Post by kenner » Mon Apr 11, 2016 8:12 am

nisiprius wrote:Thanks for posting, I'm so glad you did. I hope that if and when I get dementia I will be aware of my condition, and I hope that I will be able to discuss it as coherently and articulately as you do. Best of luck.
I join in Nisiprius's admiration for your contributions to our forum.

Best wishes.

Ken

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Re: An Update on my condition - dementia is not fun

Post by N1CKV » Mon Apr 11, 2016 9:40 am

mxs wrote:That device's function could be set up on a cell phone or other device with a calendar as a recurring daily event (or multiple events twice a day). Just another option available.
Playing off of that, you could also use a smart watch that will show the calendar notifications, that way within bluetooth range of the phone you will get the reminder.
I have met a lot of people that claim to love money, but they also seem to be the same people that are in the biggest hurry to get rid of it.

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Re: An Update on my condition - dementia is not fun

Post by therealityhits » Mon Apr 11, 2016 10:43 am

I can see why the doctors are confused. Your writing is very clear and makes lots of sense. From what you just wrote, it does not appear you have memory problems, to me.
The loss of skills is an interesting topic. I was a professional writer for nearly 30 years with over five books and 50 articles to my name. You should have seen the first and second go around. This was version 10. I know how to read and reread until it makes sense. Tip: Use the speech command and have your writing read to you. What you missing reading, your ear may pick up.

To give you some examples about my limitations.

1. It is five steps from my dining room table to the bathroom door. My wife will ask me to get something from the bathroom while at the table. By the time I get to the bathroom, I forget what I was supposed to get.

2. I have great trouble reading books. I told my doctor I had completed a book. He asked me what it was about and I could not remember any details.

3. My wife went out of town for a couple of days. While she was gone, each day I searched the apartment for her at least once until I remembered she was gone.

4. I am doing jigsaw puzzles to keep my brain active. Yet for the life of me I cannot start them. Someone else has to complete the border before I can begin.

5. I don't drive.
Can you tell us more about this device? What is it called? Where did you get it?
It is called MedCenter (70265) 31 Day Pill Organizer with Reminder System and I found it on Amazon. It is only designed to be a pill reminder.
Have you checked drugs.com to determine if memory loss is a side effect of any of your medications?
This is a very interesting point. One of my docs is sure this is the cause. But at the same time, there is no way to eliminate any of the drugs.

On the other hand, I had a private long-term disability policy. The companies hate to pay out on these policies and have a policy of delay after delay.

When I filed my application, I hired an expert to help me draft my claim. It took the company 30 days from date of application to decide to pay me. The expert later told me, my history clearly showed a case a progressive dementia and there was no way around it.

The reason my history showed this was that years before I filed I knew something was wrong and underwent a neuropsych exam and it showed some issues. I underwent two more before I filed and each one showed more and more problems.

But if you have an elderly relatives who show a sudden decline, check out (1) any new drugs or (2) a urinary track infection. For some strange reason a UTI in elderly can cause dementia but once the UTI goes away, so does the dementia.

TRH

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Re: An Update on my condition - dementia is not fun

Post by JPH » Mon Apr 11, 2016 11:14 am

A very good post on an extremely important topic. Please keep the information coming. Bogleheads, please avoid directly medical issues. I would hate to see this type of thread locked.
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Re: An Update on my condition - dementia is not fun

Post by JDCarpenter » Mon Apr 11, 2016 1:38 pm

JPH wrote:A very good post on an extremely important topic. Please keep the information coming. Bogleheads, please avoid directly medical issues. I would hate to see this type of thread locked.
No doubt.

The OP's past thread ("When The Rubber hits the Road," with update) is also well worth reading and contemplating on its own--as well as for more information on his situation. viewtopic.php?f=2&t=141387&p=2094039#p2094039

Lady Geek was quite judicious on her editing on that thread--and our fellow posters were pretty directed as well. (I just discovered it today, after seeing this thread.)
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Re: An Update on my condition - dementia is not fun

Post by ji.isaacs » Mon Apr 11, 2016 1:53 pm

"recently had my second major back operation."

This statement jumped out at me because anesthesia can cause memory and other cognitive issues.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959222/

My spouse has had two surgeries within the last year and recovery was very slow due to cognitive issues caused by the anesthesia. Short term memory issues, repeatedly asking the same question, inability to comprehend simple tasks, confusion, and lack of reasoning were truly alarming. The anesthesiologist used a different agent for the second surgery and there was a slight, but not remarkable improvement. It was about 5-6 weeks to recovery from the first surgery and 3-4 for the second.

Hopefully, some of what you are experiencing recently is related to the anesthesia, not dementia, and will improve.

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Re: An Update on my condition - dementia is not fun

Post by nopushover » Mon Apr 11, 2016 2:55 pm

Dear Realityhits,

Thank you for sharing the update on your condition, even if it may not be exactly as originally diagnosed, and of the steps you have taken in your financial life to mitigate problems for both yourself and your wife.

Your candidness is much appreciated.

Please continue to take care of yourself.

Best wishes...NP

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Re: An Update on my condition - dementia is not fun

Post by Gnirk » Mon Apr 11, 2016 3:09 pm

I, too, appreciate your update posts, and your willingness to share with us how you are affected by the progression, and as to what steps you have, and continue to take in your financial life.

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