The time for me to apply for my social security benefits has come. In the United States you can defer benefits after you become eligible up to age 70 or so. The longer you defer after becoming eligible for benefits, the higher your monthly stipend. If the monthly stipend was paid in sex , it wouldn't be nearly enough to live on, but better than nothing I guess.
I am no actuary, but I think I know how the game works. If you think you will die soon, get your benefits now. If you think you will live a long time and can afford to defer benefits, then you win the game with social security if you actually do outlive actuarial tables because your monthly payment is greater.
Optimist that I am, I had decided to play the long game and defer benefits. Even if I go soon, not all is lost. My wife will get a portion of my benefits after I go, assuming she outlives me. Her mom is 98. Her aunt is 97. Her great aunt just passed at 105. Cll or no cll, I have always thought I would check out before her anyway. So I think deferring was the right choice for me.
I applied yesterday online for my social security benefits since I can no longer defer benefits. It was this one question, out of dozens it seemed, that prompted me to write this post. In so many words, the application asked me:
Do you have a disease or illness that will likely result in your death?
What the frick? That's a bit of a personal question. Who put that on the form? What does it have to do with my benefits?
Well I had to check the yes or no box. The online form wont let you continue without answering each question. Hmmm. I'm a glass half full guy, most of the time. I'm hoping for a cll cure, I don't think that's out of the question at all. But the question made me think. Am I being realistic thinking I can outrun my cll? And if I do, so what, I'm not outrunning Father Time anyway. He is undefeated, even among tortoises and stately oak trees.
I remember asking my wife's great aunt at her 100th birthday what her secret to longevity was. She said something along the lines of she surrounded herself with happy people and avoided dumb arguments. I insisted there must be more, and she said "of course, you're right". Lol, still sharp at 100 . I know my mother in laws secret, she drinks Titos vodka every evening.
Whoops, sorry, I digressed from the form question. How to answer it? I went with the "no" box. I'll concede my race with Father Time, heck, I don't even want to be 98 yrs old (but do ask me again when if I make 97). But I'm not conceding anything to cll just yet.
And if I'm wrong and cll does get me before a speeding truck running a stop light, heart failure or whatever, whats social security going to do anyway? Sue me for answering wrong? Its a dumbass question anyway.
😎
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cajunjeff
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Certainly thought provoking Jeff. We share that dark sense of humour that keeps sanity waking with us each morning.
‘Do you have a disease or illness that will likely result in your death?’
What a daft question to applicants who are presumably already mid 60’s (?). By this stage most people have varying degrees of physical deterioration even if its just a little comorbidity. Nobody expects to die of rude good health and unbridled joy. In my case it’s ‘take your pick’ as to what will finish me first. In truth, being more of a fatalist, I’d probably have ticked ‘yes’ and taken the view that a ‘bird in the hand is worth two in the bush’. However, in that your good wife would inherit the benefit anyway, I can’t see it matters unless you’re skint now.
A similar situation exists in the U.K. for the terminally ill who can claim, (without the usual rigmarole), the benefit known as PIP under the Special Rules criteria. In essence, you’re promising the Govt to honour the agreement to go within 6 months but for decency purposes they’ll continue to pay for 18 months in case you rally round for longer than expected. What happens after that I’m not entirely sure. Imagine feeling embarrassed about appearing to renege on a terminal deal! I don’t think they’ve ever sued anyone for answering too pessimistically however! 😉
Hi Newdawn, this reminds me of my dad's situation in Hawaii. He ended up being the longest anyone had ever survived on hospice in the state. If I remember right, he lasted for about four years and the state kept wanting to take him off of hospice, but his doctor kept saying that he would go soon. He had bad emphysema, but he eventually died from a bad blood infection. He found some kind of "magic" Chinese mushroom that he swore kept him alive. Who knows? Maybe it did.
……….OR you could take the larger CASH FLOW outlook knowing that your wife will get half that bigger check after you cross over the River Styx………especially .since it sounds like she may live past 100. What a great way to show her how wonderful she is. 💖
I love everything about this post. Dumbass question, indeed! I don't know why they ask. Probably to ask some follow up questions about accelerated benefits if you answer 'yes', but IDK.
I'm still relatively young, I suppose, even though I've never felt older than I have in this last month since diagnosis. I've been pondering questions like "should I plan to retire early now?" and "is there any point to getting that second master's degree to switch to a career I may never get to have?" so I appreciate hearing you (and everyone here) plan for the long haul.
"I'm not outrunning Father Time anyway. He is undefeated, even among tortoises and stately oak trees." Love this line so much.
I can predict that the stress and anxiety you feel with cll will diminish over time as acceptance settles in. You can live a 20yr, 30 yr, god knows how long life with cll. No one knows, but we know people are living long and normal lives with cll.
In my opinion only, and for what’s thats worth, I would never let cll be the excuse not to seek some accomplishment you want to achieve, especially a second masters. Im just retired and finding plenty to do. I’m trying to teach myself spanish. I always wanted to learn it, kept finding excuses not too. I can honestly tell you that my cll doesnt factor into most any decision I make. It might one day, but Im getting on with doing stuff.
Thanks Dawn. Had they give me a “none of your fricking business” box to consider, I’d have checked it without a moments thought and moved on. In all seriousness, the question did stump me for a bit.
I’ve been working at one job or another since I was 12 yrs old and have paid way more than my share through my taxes to social security. I guess I was unreasonable in expecting a simpler form that just said thank your very much, we will give you your money back now.
If your wife has started taking her Social security I believe you can apply to take half of hers until you turn 70 then you apply to take yours at the higher rate, then if and when you pass, she can then apply to take yours which will be higher,
Oh and if your wife hasn’t started taking hers when she does she can take half of yours until she’s 70 and she then will get a higher rate when she applies at age 70
You can no longer apply for half of a spouse 's ss and wait to claim your own benefit, unless your spouse has passed away. That is no longer an option with a living spouse.
Only if she would have been entitled to half amount herself. I thought I could have collected half of my husband's but huge disappointment. For example...if spouse collects $2000 a month, then wife's ss would have to be $999 or less. My ss was only $400 difference than my husband's so I could not collect half of his. Another example if spouse was to collect $1400 a month and wife's at the time of her maturity was $500...then yes, she would collect $700. Her ss has to be less than half to get her husband's $.
Hello John. That’s an encouraging pie chart which we all hope to be true. If it’s like the pie chart I saw, I found no underlying data to show how they defined “dying by cll”. What determines if we die from cll?
If I get malaria and die, is that a Cll related death? If I die of pneumonia, is that caused by cll?My suspicion is that the chart is showing people who died early because their Cll overwhelmed them and not showing people who died from opportunistic infections, who might not have caught the infection or died from it but for being immunocompromised. But I dont know, I hope they have broadly defined what constitutes death by cll in their chart.
Either way, I am hoping to live long and prosper and I think we all have hope to be in the right part of a pie chart. 🥧 I think I made the right call in deferring. They have been predicting the end of social security as long as I can remember.
Jeff, I agree with what your saying. The pie chart also said less than 10% of CLL patients die of infections (which I thought was way low) and about 20% of other cancers.
Anyway, I thought it would be good enough proof to answer NO on a Social Security form.
I would imagine if one was in treatment, and then had complications arising from the treatment, the cause of death may have CLL in in. Like, someone in the middle of an immune suppressing course of therapy that develops Aspergillosis of the brain and then dies. It may be put down as infection secondary to CLL. Whereas someone in a remission who happens to get the same infection a year after treatment stops, may or may not have the same "cause" put down. Hard to say exactly what a doctor may put down, depending. I agree that something like low platelets during a treatment, where someone bled out or someone with anemia so severe they had a heart attack, may have CLL in the cause.
Hi SofiaDeo , in my case the calquence was the cause of my low blood counts .. after 9 months my platelets were 19 - my hemoglobin 6.4 --- i had to stop taking it the same day that my blood test results came back ...before the calquence my platelets were 150 , so the argument could be that if i had not had CLL i would not have had to take the calquence in the first place so you can't blame the calquence .. but the calquence actually made my blood numbers worse ---except my lymphocyte count was now below normal , which was good .....but the calquence was killing me not my CLL ..-- i started gazyva infusions and blood transfusions the next day ..i am now almost a year into O+V and doing great .. hope you are doing well also.. its a beautiful , cooler summer ,Sabbath morning here in southern oregon . 😊 .. hope you keep the comments coming , blessings , james
That question was not on my interview 6 years ago. I believe if you have an illness or disease likely to cause your death they want you to wait to collect. They are hoping you die without ever collecting a check. It is their compassionate plan for saving Social Security. (sick)
Once again, my wife and I love your sense of humor. I realize some wives do not think their husbands are funny. My dad was gifted with cracking us up...but my mother would say to all of us..."stop encouraging his behavior". That only caused us to laugh more and louder...inspiring my father to continue. May you have many more years to entertain us on healthunlocked.
😂😂 I bet it's a way to get survey question answers that they would wouldn't get anyone to answer any other way.
I'd answer no because I won't say yes to the universe on that. However of course I have a terminal condition. It's called, being alive. As you so eloquently put it when it comes to trees and turtles.
Something's going to get me. My worry is my function level until that point.
Who knows what's going to be true about social security by then? Maybe even somebody will have sued over this question. That seems like a good solid American way to handle it. /s
I have a (very) small private pension as well as the state pension here in the U.K. I declared the cll (they didn’t ask) on the basis they wouldn’t know as much as I did about progress in treatments ... they didn’t know. They upped my monthly payment quite a bit. I aim to beat their algorithms! You go and do the same! Regards, Clare
I went thru similar 'question boxes' just a month ago when I applied for a permanent position at the ICU. I have been working there on a long term contract ending end of this year since I graduated in bachelor nursing as registered nurse 1y 4months earlier. Before that I had been working as a practical nurse at the heart en kidney diseases ward for 12 years. So, from this 1y 4months I was on a sick leave because of my o+v treatment for my cll from January to end of April. So I was a bit anxious about my chances of getting this post. But I got it! My life insurance till my retirement! I'm 58 years and got it! So no, we're not having an illness which is about to result death. If it would be, what about diabetes, high blood pressure or other diagnosed coronary disease, for example? We live as long as proven otherwise! Keep going strong!
I would just have to deface the form and write "Yes, it's called life!". Yes I know that would put me in prison for life 🤣 so I'd have to break out and go and live in one of those traveller camps in the desert.
Seriously, I decided (as I'm actually in the UK) I had to rearrange my pensions a couple of years ago, shifting the cash from a company I didn't rate (security) to somewhere hopefully better, but due to the regulations I had to do that via a third company to do a valuation etc. They in turn insisted on working out my life expectancy.
They gave me about another 20 years.
Whilst that third party company nolonger have my cash (sorry!) I sure hope to prove them wrong on the 20 years, but I'll still be happy if they got it right.
The UK is turning into an economic basket case so I probably need to get back to paid work. If I have any success, it won't go into pension schemes.
Great post Jeff, you brightened my day, as always.
Great post Jeff. I would have to declare my life-limiting condition as "programmed obsolescence" (while I'm not aware of any randomised controlled study, there is a large number of documented cases).
Something I heard on the radio recently bbc.co.uk/sounds/play/m001p... made a big impression. Researchers who'd been DNA sequencing cancer cells turned their attention to healthy cells and were astonished to find 10-20,000 mutations per cell in volunteers of middle age. Mutations accumulate in all cells of the body, from skin to internal organs to cells shielded from any environmental insult.
The answer to this depends on prognostics, it's all statistics and the clinical trials don't report in ways that make it easy to see. It's a question I've never asked a doctor as I know they can't give an answer.
IGHV mutation and TP53 any, IGHV mutation trumps TP53 damage (33%+7%) for both BCL-2 and BTKi, prognosis is good(ish). The line on drug trials KM charts for IGHV mutated IS this group. Don't even bother with TP53 lines, they are all confused and swamped by other genetic groups. This is "low risk" and every chance to die from something else.
IGHV unmutated and TP53 wildtype (50%) is "medium/poor risk". It's about 50/50 if the CLL or something else will get them. Looking at the line on drug trials KM charts for IGHV unmutated will give a worse (but "safe") impression of expectations as the "high risk" TP53 damaged are included, they make up 15-20% of IGHV unmutated which skews the line downwards. KM charts for TP53 wildtype are useless as 40% are IGHV mutated and the line represents no one at all. Whatever therapy is used the expectation is that relapse will occur. If fit enough, may well need 5/6 therapies (below median on R/R trials) to make 20 years. This is me, I'm deaf, I'll never hear the truck or bus coming.
IGHV unmutated and TP53 damaged (10%) is "high risk". CLL is most likely to get them. KM charts for TP53 damaged will give very false hopes as the "low risk" IGHV mutated are included, they make up 30% of TP53 damaged which skews the line upwards a lot. The line on drug trials KM charts for IGHV unmutated is also useless as the TP53 wildtype are 80-85% of that group. After the first "golden" therapy, they are destined to be chasing the next trial every 2 to 3 years. On R/R trials, they will be one of the people that have had above median 6-13 prior therapies, including CAR T-cell and SCT.
Then there's "bulky disease", lymph nodes > 5cm. That increases the risk, markedly for O-Clb and maybe other chemo rather than BCL-2 and BTKi but it's not well reported.
Level of fitness also has to be taken into account, being unfit, physically or medically can preclude the use of some therapies.
In UK I have different financial life expectancy issues. To avoid giving HMRC lots of money as IHT, I have to give it away 7 years before I die (or find a wife! [1]). Mum would have been most upset if she had thought the tax man could get his paws on any of her cash, so I've got to do it for her. I also have to make a bet in the next 2 years by paying HMRC £3,200 in voluntary NI contributions for 4 of the 6 years I've been sat on my arse at home and not paying tax to increase my state pension by £1,100 a year. Just have to live to 70 to start winning on that one.
[1] That could go badly or really well depending on how you look at it. She may well spend it all before I die, like my SIL. With CLL 2-3 cruises a year are not a good idea. While a boat that fits the British broad and French canals, is capable of crossing The Channel to go cruise the Med is. Only 80 miles inland, just about as far from the sea as one can get in England but a historic inland port is just 10 miles down the canal and every lock between me and the sea is broad.
Well said and answered in my opinion!! My husbands doc has always said that he is likely to die with cll, not from cll so he lives to his fullest everyday without giving his disease any power over him. SS never ceases to amaze me! I’ve always appreciated and enjoyed your posts and this one is no different!
Your funny posts are going to keep most of us going for a very long time. You always appear to approach life with a positive sense of humor. Thanks for sharing. Sally
Long live Tito’s! It comes from my home state. My husband and I are 68 and have not begun drawing SS yet. We still own our own business and work full time. We tried to do the math and think (hope) we made the right decision. Time will tell.
Thanks for sharing your thoughts & good humor ! Life is a terminal condition and I would answer the same. It’s our money we have put in and a personal choice when to take it. I am considering taking the minute I qualify and use the money to pay the high insurance premiums from 62 to 65 when Medicare kicks in & save any leftover to buy an income generating property for “old age”. I’d rather pay tax & get even 50% of something, than get 100% of nothing. How about that other bumptious status box they “divorced”. I believe after getting a divorce that I am “single” again… Having money is important but living one day at a time with a positive outlook is priceless. Keep shining your light!!
Well my Doctors have always said, since my diagnosis 9 years ago that, "you will most likely die WITH Cll not because of it." So I will answer No to that question. Your post is a breath of fresh air. I'm a 'glass have full' person also.....actually a 'glass running over' kind of person!!!
I have non-hodgkin’s lymphoma. I was diagnosed in May 2016. I was 62. I chose to start SS. I am turning 70 in November. Should I have waited??? Sometimes I think I should have. Fortunately, I did not need the extra income but probably spent more knowing I had this.
I took my SS at 62. Background is I retired at 47! So 62 was a long time away at that time. Both my hubby & I took at 62. He was 7 years older than me. So he collected first. He passed away less than a year ago at 74. Very sad..we had only 3 weeks notice. So for us it was ok to start early but of course no way of knowing when we signed up. Some days I think I could have deferred but I had no idea I had CLL till I was 52. So for me, not knowing what my journey would be like, I picked 62.
Since I collected early there was a kind of formula that I don't know that said basically that by collecting early, it would take me to 72 to catch up. I am 68. So I am still ahead. But then I asked people who taught with me how much they are getting monthly at 66 & 70 & it is a big difference. So it depends on other money you have saved, your spending/debt, lifestyle and health.
It is one of the biggest decisions in an American's life as to when to start social security. 💕🤞🙏
I think when I did mine, there was a question specific for kidney disease/ESRD. I think the idea was to steer people with this disease to a Medicare Advantage plan, that caps yearly expenses. With many plans having "no cap" perhaps that is the idea, and the system is now asking about other diseases. Like COPD or severe heart disease, or diabetes not yet at renal failure. It's one reason I took a Medicare Advantage option, I am just happy there was a PPO option also. I knew I wanted a PPO to continue to go out of state for care, and the Advantage part has a capped amount I would have to pay even if I spent months and months in hospital. With traditional Medicare, there is no cap, just a percent of (covered expenses) hospital bill paid unless clearly specified by that plan.
Thanks for this post Jeff. I am getting close to when I think that I want to retire. I will be about 63 and a half then and I am trying to decide if I should start collecting SS then or wait. If I wait, we will be on a kind of tight budget, but could make it work. I do agree though that the question asked on the form is kind of "out there", I will probably also answer no when the time comes.
Since we retired at 58 and 55 we had already been through the decisions as to how we wanted to take my husband's pension. Again crunch numbers. Approximately the same age the logic is we would both live to similar ages. Like most women though my income would be cut drastically as I worked a shorter time to raise our children and had only a small 401K. Anyway by the time we got to SS decisions we probably made the wrong decision by taking benefits at 64 for him and 62 for me. We did put the money into investments so who can say if we did better or worse. At the time we were both in great health and there were no "Guess how long you will live" questions. Loved the post cajunjeff. Keep the entertainment coming. I love it.
my philosophy is take the money as soon as you can get it, I know far too many people who have deferred payment and have died before they even collected their first check.
one will not be able to predict their death based on health conditions only, other probabilities should be considered in a situation as this.
I believe SS payments are taxable. 2. How much more money would you get after 5 years waiting, 6 to 10 % more.
I would would considered taking SS payments now taxes paid at the lower rate and consider reinvesting the money after taxes into a tax free savings account, if one is offered in the US over a period of 5 years you would accumulate a large sum of monies in your account. After5 years you start withdrawing these monies tax free and add it to the SS amount (X) that you are already receiving from from G, this way I believe you will end up with a better cash flow to enjoy past 70.
They must have added that silly question AFTER I applied for benefits back in 2017. Answering "YES" or "NO" doesn't really matter since they will continue to pay SS benefits until you depart from this 'mortal coil'.
Two funny stories about determining the optimum time to start collecting social security:
1) I'm in mid 60s and having a rough time with CLL. Ibrutinib was awful for me but i stuck with it since chemo had failed and nothing else available short of bone marrow transplant or other horrors. I run the numbers and it looks like it only makes sense to hold off on taking Social Security if i think i'll live beyond 80. So I ask my hemoc about the chances i'll get to my early 80s. he shrugs his shoulders and says, "that's the God question and outside of my pay grade."
2) I decide to take it when i hit retirement age. Then Acalabrutinib and venetoxclax put me in uMRD, without side effects. I'm 69 and whine to my best friend that i made a mistake--it looks like i'll get to my mid 80s. he starts laughing and says, "so you're complaining that you're going to live longer? Are you nuts?
Moral to the tales--no matter which way you decide, don't look back. Enjoy the days and nights and the experiences your life gives you.
Ty so much for your delightful post. Everytme I see the words "life expectancy with CLL" makes my heat hurt and makes me ever so mad! Everyone is different! I truly believe that CLL warriors have the faith, courage and newer research and treatments that statistics can NEVER measure- its a whole person analysis (Their strength and support team and of course our God Allmighty to cure them) - ty for making my heart smile again
I have always heard that it is not CLL that will kill us, it will be complications or another disease. So I say, if CLL is all you are worried about, the answer is no. It is a weird question and I don't remember answering when I applied for my SS. Good luck, be well!
The reason I'm on this site is because of your posts. You should compile them in a book and give them to anyone newly diagnosed with CLL. What a joy it is to read your journey. Thank you!!
Love this! Here I sit in Aotearoa NZ with no pension (apart from the universal government superannuation which I can barely live on) Luckily from some good choices I have a little bit ‘in the bank ‘ to back me up. The prospect of any choice in my treatment is nil! We are still in the damned chemo age as far as first line treatment is concerned. I consider myself lucky to have a mortgage free roof over my head and honestly I have honed out a great lifestyle for myself feeling content that at nearly 77 I have had a great life! I have had the good fortune to live in many different countries ( both developed and undeveloped) so do have comparisons I can make. I also know that I am flexible enough and lucky enough to have immediate family in Australia to be able to access more recent first line treatments there.
In a way it’s good that I don’t need to tick any of this boxes that many people in other parts of the world have to, in terms of superannuation etc ( don’t get me wrong I’d love to have more choices in terms of treatment options) Go well Cajun Jeff. I love your attitude. Live for the present and make the most of life. I too don’t want to live to a ripe old age. I’d rather take the risk and live the way I want to right now. Kia kaha ( stay strong ) and go well.
Cajunjeff love the narrative and I certainly appreciate your outlook. So to answer your question when I posed it to my care team." You are going to die with cll/sll ...not from it".
I pulled my SSI at my full retirement age and it's a mere pittance to what you need to live. But I will be damned if I will just let it set there.
You got a long life ahead don't sweat the small stuff. Let your oncologist worry. You live life.
In the U.S., it does not pay to put off benefits. The net present value of the SS payments goes down if you wait. Better to take the payments as soon as possible. A google search should show you the math.
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