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 Early retirement 
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
Post Early retirement
I don't know if I can write about this here. I don't know if it's appropriate. But something has been on my mind, and I'd like to know if others have had similar thoughts.

When I think about my future, I get anxious. I'm not really worried about what happens to me. It's my family that I am worried about. What are they facing? This disease is going to ruin us financially. I don't have health insurance and won't have Medicare for 15 more months. But I do have good life insurance.

I haven't qualified for Medicaid yet. I might qualify for some kind of spend down, but doesn't that mean basically you have to sell off everything you have? Will my wife lose the inheritance she might receive from her parents in order to pay for my long term care? When I die, will the life insurance all go to pay off medical debts? Will my family be forced to live just above poverty for years while I rot in a nursing home?

How long will I live? I'm 41 years old now. My wife is 32. Is she facing the prospect of caring for a husband who doesn't even know her for years and years? I want her to re-marry. I want her to have a blessed life. Our 4 children are young. What will they have to go through while I waste away?

So, I've been thinking about taking early retirement, so to speak. Do others have these thoughts? I am seeing a therapist, and I do talk about this matter with her, but what can she say? Morally, ethically, isn't it still noble to lay down one's life for others? I mean, Jesus did, right? Our soldiers over seas do it. If I saw a train heading for my children, I'd jump in the way to push them to safety. I'd do that for anyone's children. I'd do it without thinking even once, let alone twice.

A train is bearing down on us. I can hear it whistling in the distance. What is the best way to protect my wife and kids?

Randy


Wed Aug 01, 2007 1:48 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Randy --
I often say that if I were diagnosed with DLB, I would definitely want to take early retirement. I don't really understand how Jerome handles it. I think it is because he has faith that I can take care of myself and take care of us (I'm the one who worries about whether I'll be able to).

I fully expect I'll be destitute by the end of Lewy's course after seeing to Jerome's care. I'm young -- not as young as your wife -- and I'm confident I will be able to make it on my own. Your wife is a strong woman from everything you have shared about her. Don't doubt her determination and capability to take care of her family. You mention her parents -- can they take a more active role even now in weaving a strong family net that can support and sustain your wife and children spiritually and emotionally, as well as yourself, as you go through this?

Some things for you to consider ...

1. Early retirement generally is an exclusion on life insurance policies -- no favors there for your wife and children.

2. You MUST see an estate planning attorney if you have not already done so, and one with elder care expertise (you are young but facing a common situation for the elderly). They can tell you the facts about any spend-down requirements, etc. They will probably advise about setting up some form of trust into which you will place major assets. It is possible that by having the trust own the life insurance policy, the proceeds will pass to your family outside of probate. Also, the attorney can advise on how your in-laws might structure their estate in a manner that preserves their assets intact for your children or your wife and protects them from medical bill drainage. If you cannot afford an attorney, call the local bar association in your community and explain your situation -- they can probably refer you to a member who will work with you pro bono.

3. Are you and your dear wife able to talk with one another about what you are each feeling as you two cope with this challenge? Or do you think you are sparing each other by not talking about this? I hesitate to talk about the end game issues as I don't want to take Jerome down that emotional path. At the same time, I have the need for us to face this together and plan together to the extent Jerome is still capable. If you and your wife are not talking to each other about some of these terrors, you two may just be making it harder on both of you. Please don't be afraid to talk -- your wife is probably taking cues from you about what it is safe to talk about. Some of the most important moments of our 21 years together have been our discussions about what is happening, what will happen, and whether we're coping.

4. Early retirement is an option -- but would you be doing your children or wife a kindness by leaving them that legacy?

Randy, without insurance or health benefits, are you able to get the medical attention and care you need right now? Have you accessed all the information and referral sources that could point you to additional financial assistance? Is your wife doing okay -- is she taking care of herself as well as you and the children? Does she have friends or a counselor in her corner? Do your children have someone other than their parents to talk to about what's happening at home?

If you were not experiencing all these fears and concerns, there would be something wrong with you. You're only demented, you're not crazy! ;-) Congratulations -- you're normal as well as terrified! But you are a smart man and if you don't let the terror get the better of you, you will be able to assist in making all the proper arrangements to insure, as much as possible, your family's financial security as well as their emotional well-being.

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Renata (and Jerome-in-Heaven)


Wed Aug 01, 2007 3:28 am
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Early retirement is not always an exclusion in life insurance policies; most of those exceptions either fall off or fade away over a certain period of time early in the life of the policy - two years is pretty common. It varies by state and by the particular insurer.

That said: I wonder how your view of this option would change if your symptomatic treatment were ideal/optimized. If you weren't floridly symptomatic right now, and the medical treatments were working (big ifs, admittedly), would you still ponder early retirement in the face of a progressive degenerative illness, or would you hold out for The New New Thing? I know that in Cal's case, the pace of advancement in treatment isn't matchin the pace of his disease, and so it's a game of effective palliation.

On the other hand, I look at my mother; a terminal diagnosis, but she's now to a point where she could conceivably die with her disease, not of her disease. She's well "enough" with treatment, and stable-to-slowly-progressive, and part of the goal is, bluntly, to keep her alive and well enough for The New New Thing.

Here's a datapoint - human trials of neural stem cells in PD are working pretty impressively - they don't just hold the line on deterioration - they improve function and drastically slow continued damage. Will it work in DLB? Who knows. Will it pass Phase III testing? It's a crapshoot. But we're plodding closer to disease-modifying treatment for DLB. If the symptoms were well-managed, would you still want to take early retirement just because the current endgame is so grim?

E

(as an aside, take steps now to protect the inheritance, the house and even the life insurance proceeds - the beauty of our tax system and spiralling catastrophic healthcare costs is that asset protection is a cottage industry)

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Wed Aug 01, 2007 12:33 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Randy,

I do not feel qualified to give advice on the matter of early retirement. I would say that it is unclear that your future is horrible. We have had two LBDers die recently in our local support group. Both declined very quickly -- over a matter of days. But prior to that both were living quite happily. I'm convinced that one of them pondered early retirement early on because he was quite depressed. In looking back, I'm sure he'd say he did the right thing to not retire early because he got two more good years with his wife and children.

I strongly encourage you to talk with a Medicaid attorney and a financial planner. (It would be great if they were the same person or two people in the same office who work together.) Maybe you can get on Medicaid now. Maybe your wife's possible inheritance can be protected.

Here's a fact sheet recently put out by Georgetown Univ on Medicaid's spend down rules:
"Medicaid's Spousal Impoverishment Protections" - explains the Medicaid eligibility rules regarding income and assets for couples in which one person requires long-term care in a nursing home.
http://ltc.georgetown.edu/pdfs/spousal0207.pdf

I don't exactly see what's wrong with life insurance going to pay off medical debts.

I don't want to offer financial advice because I'm not a financial adviser and can barely manage my own investment portfolio. So instead I will give you a link to an article that I found very helpful in figuring out how to make the most of my father's money knowing that he won't be alive much longer (clinical diagnosis is PSP):
http://online.wsj.com/article/SB117685092104173241.html

Robin


Wed Aug 01, 2007 6:06 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Robin:

Not to go off on a tangent, but punishing people who saved for their future by using their investment proceeds to pick up the bills that, in theory, comprehensive health insurance should have essentially covered, smacks of discouraging forethought and planning. Most people do not believe that their life insurance proceeds are intended to fuel for-profit healthcare. Making decisions now to protect that asset for the intended beneficiaries is simply an admission that our present system of healthcare finance is not sustainable when it bankrupts widows.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Wed Aug 01, 2007 7:22 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Having no life insurance I haven't a clue as to why anyone would want it. But to me it seems a bit like bemoaning spending all of my dad's money on his current healthcare needs because he should leave some of it to his kids. Why shouldn't it be spent on him?

I do understand your point on the tangential issue, however. Widows shouldn't be left poor because healthcare is so bloody expensive. Isn't this what Medicaid is for?


Wed Aug 01, 2007 7:56 pm
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
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I bought life insurance in order to provide for my wife and children in the event of my death. I have been the sole financial provider for them. My wife has more than given her sweat equity in raising four children and keeping a house up to 'parsonage' standards. She and my kids stand to lose everything I was so careful to plan for. I took out this policy and have been paying for it since I was 23 years old -- long before I got married and had children -- because I had the forsight to know I would someday have a family and would need life insurance I could afford. I also bought my own disability insurance which is now paying out for the next five years. I'm glad I put so much thought into protecting my family. Without the disability insurance, which I receive in addition to Social Security disability, we would not make it. We would be living in abject poverty.

I love my wife. I love my kids. If I die and the life insurance money evaporates to pay for medical bills, where will they be? How will they live? If I were to die today, they'd be taken care of. There would be enough to pay off a mortgage and pay for college, and pay for my existing medical bills. There would be enough for them to get by.

I think I did pretty well. The gap in my coverage is long-term care, and also health insurance. I had long-term care insurance and health insurance through my employer, so I thought I had my bases covered. But then I got sick and lost my job, and I couldn't afford to pay the premiums to continue medical and long-term care insurance. My savings evaporated quickly. The disability insurance I bought almost twenty years ago has kept us afloat -- but it also disqualified me for Medicaid.

So we're in a bad place. I called my insurance agent, and he verified that the insurance would pay even if I killed myself.

So. I need to know my options. Right now, it looks like the best way to insure my wife and kids will be provided for is to kill myself. Or maybe we could move to Canada, where they have universal health care? But I highly doubt they let you immigrate just to receive health care.

I'll find an attorney to see about protecting my family. I'm not going to do anything rash.

RG


Wed Aug 01, 2007 11:12 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Randy --

Again I ask ... is checking out the emotional legacy you want to leave for your wife and children? Do you think they would trade time with you for more money? Or is this really about justifying an act intended to spare you what you expect the future holds for you, and posturing it as an altruistic act? Whatever you decide to do, do it based on honesty with yourself and with your wife.

Getting back to the practical ... do you all have a life insurance policy on your wife's life? If you were hit by a bus tomorrow, she and the children would be okay financially between life insurance and however her parents might help. But if something happened to her tomorrow would there be means available for assisting you and your children?

I get asked all the time about why we have insurance on my life and not on Jerome's ... because I know I will be able to take care of myself financially even if we end up broke when I end up alone. I'm far more concerned about how Jerome would be taken care of financially if something happens to me.

You are in a unique spot because of your age and having a beautiful young family. It is critical you get immediate financial planning and estate planning counsel from a professional knowledgeable about healthcare trusts and such, as many of us have mentioned in earlier posts.
If that seems financially unfeasible for you, please let me know on-list or off-list -- I have access to some pro bono professional resources that I can connect you with.

Thank you, again, for being so upfront with us about what you are going through. It helps us understand what our own LOs are experiencing. We are with you 100% on your journey, you're not alone.

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Renata (and Jerome-in-Heaven)


Thu Aug 02, 2007 3:37 am
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
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Yes, we do have life insurance on Tamara, but not nearly as much. If she were to die, there would be enough to bury her plus a bit more. But our level of income would not change. Our kids would lose two parents, one immediately and one in stages. I would need help caring for them.

I don't think I have any kind of hidden agenda. If so, it is subconscious. I've been pretty straightforward about what I am thinking. If I did not have kids to care for, I would think differently about my best options.

Of greater interest to me than altruism (or pseudo altrusim) is how my faith should inform my thinking. I am usually reluctant to get too theological on this forum out of respect for the wide variety of religious perspectives. And yet, for me, my faith is paramount. I have been talking to God about this, and I think God has been talking to me. And I think God is saying that I need to stop worrying so much and to stop trying to take matters into my own hands, that I need to trust in Divine providence to see me -- and my family -- through this crisis.

I do not for one second believe that people who kill themselves are doomed to eternal suffering in Hell, but I do believe that for ME to kill myself would be a tragedy of misplaced faith. And so, I have decided to seek the peace of God promised in Phillipians 4:6-7 -- "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving, let your requests be known to God. And the peace of God, which surpasses all understanding, shall guard your hearts and minds in Christ Jesus."

I am not going to kill myself. I'll talk to my doctor about increased depression and anxiety. I'll talk to a lawyer about specific ways to protect my family. And also, more importantly, the Lord has shown me a more faithful way to live and die. Whatever legacy I DO leave, let it be one of faithful response to the grace of God. I'll spare you all the extended sermon.

Thank you all for your kindness. With Divine guidance, maybe we'll all see our way through.

Grace and peace,

Randy


Thu Aug 02, 2007 10:41 pm
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