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Thoughts On Aging?
I have a birthday coming up soon so, naturally, I’m thinking about getting older. In one instance, I’m grateful for aging. Many people dread their birthdays, but I find it celebratory that I get to tack on another year past my life expectancy.
Then again, it reminds me that living with SMA, time isn’t on my side. So, then I guess aging has its drawbacks, too. It’s a catch-22 sort of thing for me.
How do you feel about aging?
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8 Replies
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First off…I really think everyone should completely ignore the concept of life expectancy for someone with SMA. I am already well beyond what age any doctor would have told me about life expectancy. In my opinion, if You can avoid too many serious flu, colds and Corona and look after normal health needs, You are just as likely to live to old age or get struck with a meteor as anyone else. The problem with aging and SMA isn’t that You may have too short a life…the problem is that the entire system for the disabled isn’t designed with the expectation that you may live a long and productive life.
My personal belief , and I can provide no scientific support for this , is that life expectancy for people with SMA is based largely on out dated inaccurate data. Years ago, people with SMA were institutionalized, they were often ignored by doctors for treatable issues, and quite frankly were uncared for by families and society in general …so naturally the mortality rate would be significantly higher . Add improved treatment for breathing issues, scoliosis…and just societies slight improvements in recognizing people with disabilities as actual people …and you can begin to see how data can be very skewed or at least not entirely reliable . You know your condition, take proper precautions, and I would be far more worried about the life expectancy of idiots of perfect health who try to inhale cinnamon for a social media dare.
Focus your concerns on reliable attendant care when can no longer turn to family , the fact that you can’t inherit or own anything if on disability and have to be on disability to get attendant care. Basically all social services assume people with severe disabilities won’t live into their 50s…so is a huge gulf between 50s and qualifying for senior services. Worry about politicians who want to cut medical coverage , disability , medicare, medicaid or any of the programs many need to survive.
Lastly …wear sunblock…suntans are great when young but you’ll be old sooner than you think.
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Yeah, like Eric said we should pay no mind to life expectancy. It’s really so different with everyone’s individual circumstances. Heck my brother with SMA passed away when he was 4. I’m 43. Honestly, I never actually expected to outlive my parents. It’s hard to fathom my dad died almost 7 years ago.
Looking back I might have done things a little differently had I known I’d surpass 40. I probably would have made better financial decisions to be in a better spot. Maybe I’d have kept up on pt too. Oh well.
How are you celebrating your birthday? Any fun plans?
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I agree as well. And I technically don’t pay attention to life expectancy, especially after surpassing mine by 30 years and counting. But I guess sometimes I think about things like when my body gets weaker and I lose an ability, I’m reminded of disease progression and that I’m not guaranteed a long life. But then I’m like, “Screw it, none of us are.” It’s something I go back and forth on.
No big plans! Keeping it low-key with the fam as long as everyone stays healthy. 🙂
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This is something I’ve been thinking about lately. I turned 37 in June. I’ve been running short on PCA care, so my mom has been doing more than usual, which is getting tougher as she gets older. I wonder in the future whether I will be able to have access to reliable PCA care. I worry about being institutionalized eventually.
Related to the care stuff is the financial stuff. I was 30 when I got my first full-time job, so I feel like I’m behind compared to my able-bodied peers. I’m trying to put money back for my care in the future. Fortunately, an ABLE account allows me to do that. But it does have limits (after $100k, SSA will start counting it against you). And as Eric said, we aren’t allowed to own things. I have a pretty good job now, but I had to turn down a 401k which seems like dumb financial move.
And then there is other life stuff. It is not nearly as easy to make and keep friends as it was when I was younger and in school. I have people in my life, but I wish I would have pursued more romantic relationships when I was around more people my age. I’m something of an introvert, so I tend to have a small social circle. It can be lonely at times. I’ve been thinking I need to get out more and maybe do something about that. Lol.
All of that to say, yeah aging sucks. One bright side is I no longer look like I am 12 years old, which is something that plagued me all throughout high school and college. ????
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Yep, I think about all this stuff too. I imagine it’s normal. Also, I feel you on being thankful that you don’t look like you’re 12 anymore. ???? I think I probably look like I’m 20 right now. It’s a big improvement since looking like I was 14 up until a couple of years ago hahaha.
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As someone who once held a good paying job and formerly started to make a nice nest egg…if you are still getting care from aging family members and have not looked into the rules and regulations for receiving attendant care…please do so…now. Odds are, unless you are a millionaire, you will be unable to pay from savings for attendant care. Figure about 90,000 a year for attendant care give or take a couple thousand. No one will work for less then three hours at a time, most demand five. So, figuring 6 hours a day, 3 morning to get up and dressed, 3 at night times 365 days a year…even paying minimum wage would be more than most people can afford…more than many i know save in a lifetime. Add agency cost because you are not going to want to constantly find, hire and make sure all hours are covered if someone calls out or gets sick, extra pay for holidays, more if need extra help for doctors visits…$90,000 is the low end of your yearly cost. So…you will need government assistance. Depending on where you live, if you are lucky enough for their to be any programs at all…most likely you will be required to have less than $2,000 in total assets (they even ask if have gold teeth) and most likely have to prove are too disabled to work to qualify . Yes, there are better programs that may let you work if can find reliable attendant care willing to arrive before noon…but don’t rely on that.
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I’m currently receiving attendant care via a state Medicaid program. I have Medicaid through SSI, which does mean I have to follow the income and resource limits (the $2k you mentioned) but there are three loopholes you can exploit.
1. SSI 1619b Individualized Threshold – this is a state where you are making too much money to receive an SSI payment every month, but you still need Medicaid-provided attendant care to continue working. They will take into consideration how much your attendant care costs and use that to calculate a new (higher) income limit.
2. ABLE accounts. These came out several years ago. Basically they are accounts that allow you to store money without it counting toward the $2,000 asset limit (up to $100k).
3. You can have over $2,000 in your bank account, so long as it is below that by the end of the month. In other words, they don’t care about changes in your account, just the month-ending balance.
(Disclaimer: I’m not a lawyer and this is not legal advice.)
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Great discussion! I just wrote a column about this subject.
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