What If You Needed Long Term Care NOW?

[Meowmalade]

InquisitiveMind, thank you for sharing your inspiring story and insights!

[tobitonic]

 

I've noticed a lot of comments in the thread where the poster takes the position that they would take their own life.  I've thought the same thing.  But there's a catch.  As I've grown to the age where people of my parents' generation are facing difficult end of life choices, none have taken the Oregon Option.  This has included a number of people who for much of their lives made the same confident pronouncement -- when it comes time, I will end it myself.  My (anecdotal) experience is that people hold on to life instead, for whatever diverse set of reasons.  Please accept from me that the folks in my example are  people of firm conviction, courage and principles.  What I took from this observation is that "middle aged me" cannot meaningfully speak for "disabled/dying/dementia me."  Life is too complicated for that degree of foresight about that massive an undertaking.  So yeah, I've opted for LTC insurance.   

I agree. When I was in my 20's and 30's, I said the same thing. "Wow, if I ever get to the point I can't take care of myself, I'm ending it."

Well now that I'm 58, and mortality is nearing, ending it myself isn't the plan.  Seems like the less time you have left, the more precious the remaining time becomes.

I will echo the above wise posts with my own experiences. I was diagnosed with a degenerative neuromuscular disease as an adolescent, and at age 18, after suffering through a terrible high school experience, I decided that I couldn't envision living the rest of my life in continually declining health, and chose to end my life. Was heroically rescued at the last second, and lived to graduate from college and earn a Ph.D. in an in-demand scientific discipline. At present, from an outsider's perspective, my quality of life might seem to be of very poor quality: my strength is so minimal that I can no longer walk and am bedbound, I can do very little for myself apart from using a computer and feeding myself, and I rarely leave the house.

However, I have a great job with a prestigious company that pays well and challenges me to learn new skills on a daily basis. I have published research papers in scholarly journals and have been a part of some great research teams, with the benefit of enjoying fun and brilliant coworkers. I am allowed to be a fully remote employee, so I don't have to waste any time preparing for work and commuting to and from a job each day, or rotting away in a cubicle. I have a tilt table and a standing workstation so that, even though I can't stand on my own, I can still do most of my work each day while standing; apart from being a comfortable position to work in, this also prevents bedsores, joint contractures, digestive problems, and other horrific effects of sitting in bed constantly. My work schedule is flexible so that, in general, as long as the work gets done, I can set my own hours. I have friends with whom I visit, relatives whom I love, and I can spend time with my beloved nieces and nephews. I have completed dozens of online courses via Coursera and other MOOCs, and I continue to expand my skillset. I have freelance work that I enjoy and that provides a substantial second income, and if the time comes when my family can no longer assist me at no cost, I will be able to use that side income to pay for residence in an assisted living facility. My net worth is much higher than those of most of my able-bodied peers, and in good months, I can save 90% of my income. My savings are at a sufficiently comfortable level that I can regularly donate to charity and to friends and family raising money for special charitable events. I exercise for at least 90 minutes each day using an assistive exercise device, and I spend at least 7-8 hours each day standing. I follow a paleo diet and am able to keep my blood sugar and blood pressure at healthy/optimal levels, despite my inability to exercise like a normal person. I have no pain, no psychological problems, sleep comfortably for 7-8 hours a night, don't take any medications, have good energy and good mental focus, and apart from my inability to move, have a very comfortable and enjoyable life.

If you would have asked me at age 18 whether my current life, with its pros and cons, would be worth living, I would probably still have said no. But speaking from the other side, having worked so hard to accomplish so much over these past years, I agree with the other posters that once you are in a situation yourself, your feelings might change substantially. Humans have an inborn desire to live and to thrive even despite being subjected to the most challenging conditions.

Well - this makes me feel like a weakling.  Thanks for the perspective and bravo!!

What you and the others said; thanks for sharing and also reminding us to be grateful for the things we do have in life rather than just pining endlessly for more.

[InquisitiveMind]

Thanks for the positive feedback, all. As that was my first post on this forum (actually, my first post on *any* forum/site regarding my personal situation), it feels really rewarding that others appreciate my perspective. (I do receive my share of criticism from family members...) Funnily enough, the more disabled I have become over the years, the more *I* also appreciate each of the positive aspects remaining in my life, and the more I realize that as long as I continue being able to learn, work, and communicate, and don't have serious pain or the inability to stand and stay healthy, I hope and expect to live a very long and productive life! :)

[iris lily]

Thanks for the positive feedback, all. As that was my first post on this forum (actually, my first post on *any* forum/site regarding my personal situation), it feels really rewarding that others appreciate my perspective. (I do accept my share of criticism from family members...) Funnily enough, the more disabled I have become over the years, the more *I* also appreciate each of the positive aspects remaining in my life, and the more I realize that as long as I continue being able to learn, work, and communicate, and don't have serious pain or the inability to stand and stay healthy, I hope and expect to live a very long and productive life! :)

thank you for your perspective, and to my mnd, you actually lead a rich and active life.

I think about not taking part n chemo if I came down with cancer, but it depends on what the recovery statistics are. But rhen, I dont know how clearly physicians convey that knds of informatim.. I just know that fancer was going tomget me after a year. I wouldnt want to spend 6 months of that serving the cancer treatment industry.

[MudDuck]

InquisitiveMind, thank you for sharing your story. I found it inspiring.

[Cassie]

IMind: I have worked with people with disabilities for 25 years helping them to return to work and I love your story. Many severely disabled people are able to work.  Many people are able to find meaning and enjoyment no matter what life throws their way. Thanks for sharing:))

IL: I know exactly what you mean. I had a friend with a rare aggressive type of breast cancer and she was told within 5 years she would be out of remission which is what happened. She chose chemo to get the 5 years.  When the cancer came back with 26 spots on her liver she didn't do treatment because in 2000 most people with or without treatment were dead in 4 months and why be sick before you die. She lived 2 1/2 years and was only sick for one month.  She researched diets and found that meat is hard on your liver so did a special vegetarian diet where people had been successful at living longer then the odds. I think you always have to look at the big picture.

[okits]

InquisitiveMind, thank you for sharing your amazing personal story and insights.  It calls to mind a survey I heard about, where parents of children with disabilities were asked to rate their own quality of life if they were to have the same disabilities as their child, then the actual children were asked to rate their quality of life.  The children consistently rated their quality of life (actually living with disabilities) as being much higher than the answers their parents gave, imagining themselves living with the same disability. 

There are many things to be grateful for in life.  Thank you for the reminder that it is likely we can't predict how our future selves will feel when a scenario is no longer hypothetical. 

[intellectsucks]

Another option to help pay for long term care is to purchase a long term care annuity. It has a yield of nearly zero, but will pay 2-4 times the initial premium if needed for long term care. Usually comes with a similar (but lesser) multiplier as a death benefit. Most will also have a return of principal feature after a certain minimum holding period, so if you end up not needing LTC you didn't lose the money you put in (unlike with LTC insurance). It's also not subject to changes in premium or payout like LTC policies are.

[GetItRight]

I'm a desk jockey so if I still have my mental capacity and can work a computer I'd be able to return to work in some capacity. If I was unable to work, death would have to do. Family would probably take care of me if there wasn't a high cost but would probably tire of the time involved so that's not a permanent solution. I don't jump through hoops and dance the government dance to collect money stolen from others at gunpoint so anything government related is not an option from an ethical and moral standpoint. Perhaps there are charities that would help though. I've got another 2-3 years of student loans before I can build a stash and have anything to work with, so if it happened right now and I had no way to earn money within a few months to a year, I would probably starve to death out in the elements in a pile on my own filth.