Who Gives a Care?: Plans To Help the Sandwich Generation and the Growing Care Crisis

Don’t you get nervous talking to attorneys? I do, and it’s been a nervous time for me lately.

I’ve been calling lawyers to ask about opening a trust — no, I don’t really know what that is either, except I keep reading advice that I should look into one, like, right now. You see, with advanced and progressing MS, and with my wife and I both being seniors, we have a good-enough chance of needing care down the line. While full-time home care can cost nearly $69,000 a year (CNN) and a nursing facility at least $104,000 yearly (KFF), our home and life’s savings won’t last long. To get any assistance, we’d have to qualify for Medicaid, which requires selling off the home from under my wife. My nervousness talking to attorneys is a small price to pay.

 francescoridolfi.com | Credit: Rido - stock.adobe.com

We’re not alone. Seventy percent of us who live to be seniors will need care, according to the Urban Institute. More than 105 million in the “sandwich generation” are caregivers of some sort, a number that has more than doubled in the last decade (Rand Corporation). More than 14 million are caring for service members or veterans. Two-thirds of them have to balance this with a job, and often they take a hit in income by having to go to part-time work or taking time off (AARP).

Seventy percent of seniors. One hundred four million people. Hm, think there’s a constituency there? Seniors just happen to be the most reliable voters, too.

Citing her own experiences caring for her late mother battling cancer, Vice Pres. Kamala Harris has proposed a Medicare at Home program, which would expand Medicare to help with home care costs for seniors and people with disabilities who might earn too much to qualify for Medicaid but cannot afford long-term care. She also wants to cap child care costs at 7% of income, pass paid family and medical leave, and raise wages for care workers. (The last one’s critical, because there is already a severe shortage of care workers due to the poor pay.) She proposes paying for this with savings from negotiating more prescription drug prices down with pharmaceutical makers, which has already been successful with a handful of drugs under 2022’s Inflation Reduction Act.

This follows Pres. Biden’s ambitious 2021 proposal to invest $400 billion in care services for children, seniors and people with disabilities. That part of the Build Back Better bill got shot down in haggling with Congress, but it was a bold target to set. Now the idea out there.

The need is great: I have spoken to an at-home care coordinator in Pennsylvania who says people in her area are stuck in nursing homes not because they need intensive care, but because there are no home workers available so that they can live a place of their own in the community. Also I’ve talked to the head of a statewide network of care workers in Austin, Texas, who recited a list of care workers she knows who, out of love, continue to work beyond what their aging bodies can handle, because there are no younger workers to take their place in caring for their clients. According to Nicole Jorwic, who has long watched the issue as head of advocacy at nonprofit Caring Across Generations in Washington, D.C., "It doesn't matter if you're in Portland or if you're in central Illinois, … it is a nationwide problem.” Plus, she noted, the population is aging and the need for care will only increase.

This weekend Donald Trump proposed a tax credit be given to family caregivers. Advocates like Jorwic are skeptical without details or ideas to build up the needed care “infrastructure,” i.e., creating more care workers and supports. But the point is that the care issue is on everyone’s radar now, and that’s good for us.

But for now, I pick up the phone, and prepare to get nervous again. Go vote and let them know we’re out here, people.

Looking for Dr. Right (Cause the difference between a good doctor and the right doctor is huge.)

Imagine you and your roommates are desperate for a bite to eat, and at long last some carts roll in. Everyone gets a covered dish, all but you — before you can even ask, somebody says, “Oh no, that’s not for you. Wait until the next round of carts.” The dishes are uncovered, and there’s some grousing but everyone chows down, right in front of you. Then another round of carts shows up and the roommates get a choice to change over to those meals. All but you again, because “Oh no, that’s not for you either. Wait until the next round.” On and on this goes, for years.

Let’s hear it from the other primary progressive MSers with plate-envy. Most cases of MS are diagnosed as remitting-relapsing, with distinct attacks of symptoms, and for whatever reason, most of the medicines treat that variant. In comparison, those with primary progressive have gone with empty plates until recent years and a treatment approved for PPMS, Ocrevus — but I’ll get to that later.

Johnny, tell him about our exciting parting gifts.

Over my decades with MS, I’ve been on a couple of disease-modifying treatments, with little results. As my condition progressed, my treatment screeched to a standstill. Though my chief neurologist in those years was a leader in the field, I received little medical support or encouragement, other than the occasional round of physical therapy I requested. Pretty much all of the treatments that came out after Betaseron did in 1993 were named “Oh no, that’s not for you.” That’s all I was hearing, so that became the attitude that seeped in and I settled into a kind of long-term funk. If my expectations were low, my morale and self-esteem were probably even lower.

Then a crazy thing happened on Reddit, of all places. There was a new treatment out, Ocrevus, and someone had found a doctor across town who was one of the drug’s researchers. The Redditer was eager to try the treatment because she felt kicked around by the disease and the medical establishment since her diagnosis eight years ago. Welp, eight years? What about 25 years, which was how long I’d been struggling? Frankly I was getting sick and tired of hearing people complaining about MS — which of course they’re going to complain because they’re frightened and frustrated — but for that one moment I’m thinking, ‘My case is so much worse than almost every case I’ve encountered.’ And here I was, getting passed up yet again, this time by someone who has had the diagnosis less than half as long as me. What about me? What am I to the medical establishment?

I was fed up and tired of eating from everybody else’s dog dish. From the info online, I found a research nurse who worked with this doctor and I contacted her, hoping she wouldn’t hang up on me. No, instead she helped me schedule with her doctor! The clouds parted and the angels sang and my jaw dropped to the floor so hard I had to winch it back into place. I floated around for the rest of the day, singing and whistling with the bluebirds like I was Snow White or something (but sounding more like Dopey).

Bringing it.

I went to the appointment to ask for Ocrevus, which was being promoted for PPMS, and the answer I got was “Oh no, that’s not for you”: It turned out that Ocrevus carried a risk of respiratory infection that I’m ill-prepared to fight off. So why was I so happy, ready to hang out with muh bluebirds when I left the office?

The difference was that the new doctor and nurse had a plan, an entire anti-MS battle map. This was an appointment that changed my life forever. My MS would not get treated directly, but there was a cascade of MS side effects that we would be taking on, with a whole team of medical pros. A new rehab doctor would be managing the great amount of spasticity/muscle tone causing me stiffness and fatigue, and hardship (even hazards) for my wife as my caregiver. A new pain surgeon would be giving me a baclofen pump implant to address spasticity more effectively than any oral tablets could. A new urologist would give me a suprapubic catheter, to manage ever trickier bladder issues. A new physiatrist would eventually give me Botox injections to better control my muscles and fatigue. New physical and occupational therapists would be there to help me learn these new ropes.

It was a lot of appointments, for sure, but as long as my insurance held steady, I didn’t feel put out or overwhelmed. Rather, I was energized: I went from nothing-going-on, to a whole bunch of stuff going on, for my wife and me both. Each of my new team was in touch with the others, so I felt supported like never before. This was the opposite of “that’s not for you.” There were tangible improvements happening in our lives.

My new rehab doctor, whom I hadn’t even met, told me over the speakerphone, “We’re going to give you a new body.” My wife beside me had tears running down her face. Something was happening — for me, for us — at last. We had a medical team to consult with, who had our backs and listened. Seriously it felt like the doctor and nurse possessed a golden key that unlocked the great puzzle that was my world.

Since then, I’ve added and made changes to my team. This felt like such an awakening in my life, like I had come back from the dead. Starting here, I gained a lot of momentum in life. The only other thing that compares is finding my friend Dave Perez and the Skydiving for MS event he offered in my area. Both moments felt like I was shaking off a lot of rust and getting off to a running start again in life. Life can pass you by quick, so be careful of remaining still for too long.

You best heed, whippersnapper.

Finding my health care team and improving on it over the years was a godsend. It’s something I recommend to everyone. Usually it’s difficult to find those doctors who take time with you and listen and function as collaborators and team partners, but once you find them you’ll see how worthwhile it is.

Mark Twain said “the difference between the almost-right word and the right word is … the difference between the lightning bug and the lightning.” Here’s wishing you lightning and inspiration in your upcoming appointments: I want you to hear, “Oh yes, I’ve got ideas for you.” There is a huge difference between a good doctor and the right doctor, just like there’s a huge difference between “oh no, that’s not for you” and an appointment that will change your life.

Shiva Jukes Their Back Out

A jack of all trades is a master of none, though oftentimes better than a master of one. That’s a caregiver, in a nutshell. Except a caregiver is usually limited to two arms, the righty and the lefty, the dexter and the sinister, which limits how many trades they can exercise at once. Many have 10 articulating fingers, true, and brains that span in a million directions, though all of their capabilities and selflessness is nailed down to a single austere plane, where a pair of clock hands turn on a perpetual axis of time: Everything is the slave of time.

That is why the Hindu God Shiva should be the patron of caregivers. With multiple arms, each with their own purpose, Shiva is the Swiss Army knife of Hindu deities. I don’t want to make light of it, because this is someone’s deity, but I’ve long had a thing for Shiva, ever since I saw him through a shop window on Devon Avenue on the far north side of Chicago, where you can find a mile-long stretch of Indian and South Asian stores and restaurants. One evening, I toddled out of one of them, chewing aromatic fennel seeds, still blissed out from the curry. Have you ever had a spicy curry or a pepper dish that makes you levitate out of your seat? So I’m walking off this incredible meal, weaving between the cars rushing by, because, as Dennis Hopper would say, ‘That cat’s on the curry, man.’

In a glass showcase I spotted a colorful graphic on a sheet of 8.5” by 11”. There was Shiva, red and brightly adorned, with arms fanned out like peacock feathers and holding an array of implements — a sword, a pike, a lantern, a little dancing Pentecostal-type flame, an eye that opened in the palm of a hand — and in another of his hands he holds a blue guy’s head. (A quick search tells me the dripping head belongs to Brahma, who I thought was the head man — no pun intended! He doesn’t look happy about the situation. I’ll read more about this later, but from the grizzly scene and body language, it looks like a domestic.)

What was most beguiling was that Shiva does this all with such a placid, lovely face. It was very matter-of-fact, like Shiva was hanging out the wash. I liked that aspect of him, that he was knocking out some serious work but it was just business as usual, and he was doing it in style, with fine threads and fine face — in fact I just found out I’d accidentally been misgendering him for decades: Sorry, Shiva. So I went in and bought it, and hung it on the wall of my new apartment. I was pretty healthy then.

After a couple of years of those two hands turning on their axis: not so much. The apartment was no longer very tidy. I’m sure you could find dust, plenty of it, and a sinkful of pots and pans because I’d lost the energy to do anything about. My transmission was stuck in multiple sclerosis overdrive, and I did the bare minimum to get from day to day: Basically using one set of dishes and silverware, stretching out the laundry for as long as I could, like that. The handrailing leading to my second-story entrance wobbled now because I leaned on it so much. Shiva himself had fallen on the floor a couple of times and been re-tacked up, but still he had on that same groovy face, and I needed to see that.

There was a couch there in that small living room, a sleeper sofa that was my Oma’s. Man, was it heavy to carry upstairs into the apartment. Often I’d pitch face-first into that couch, still in my leather jacket and clothes, and shoes scuffed on the one side where I dragged my foot. I would dive into that couch and zonk out for hours. If I woke in the middle of the night, the glow of the streetlight outside would stream onto my wall, striped by the half-opened window blinds, and illuminated Shiva above me, coolly and calmly transacting her 24-hour killing spree up on my wall. You can count on some things: death, taxes, Shiva. I looked up and thought, Shiva, come save me. Before I zonked back to sleep.

One of the friends I shared great times with on Devon was a girl I was dating, someday to be my wife.

Even before we were married, as we grew more serious — as my condition grew serious — I watched her grow many extra arms, new ones daily, right before my very eyes, and become a caregiver, doing more things than a person with two arms should rightly be tasked to do. We don’t have kids together, and this was before our vows, before our engagement, when she had no skin in the game. But there was that level of devotion from her, an unfolding a mystery which I didn’t understand. This little Shiva is tough, smart and resourceful, but it’s an even match: multiple arms versus multiple sclerosis. She’s 5-6, I’m 6-2. She’s 140 pounds, I’m 172 — you do the math. So far she hasn’t taken off my head, YET.

So, plot twist, what happens when Shiva gets hurt? When her array of arms is going great guns, but her back weakens and becomes injured? When the daily tasks of dozens of hands go unmet, and pile up? And far worse, when her calm and pleasing visage gets twisted in pain and frustration? That has been the story of our summer. We’ve gotten through this before, and we’ll do it now. I’ve seen this movie before, and Shiva does rise again. She’s already on her way back.

Meanwhile the two hands keep spinning, faster and faster on their axis.

Newly diagnosed "can truly be optimistic about their prospects for a life free from disability"

Years ago I was skeptical of all articles like the one I'm highlighting below. I'd see them regularly -- 'The New Drug on the Way Could Be a Game-Changer' or 'A Cure May Be In Sight,' stuff like that -- I mean, how many times can you hear them cry wolf? Particularly when you have primary progressive and there were no treatments at all. But now there is so much going on, and the post-pandemic science has moved the sticks so much. … The landscape feels much different to me now. It doesn't smell like BS anymore. (How's that for unscientific?) Even if there still isn't a treatment for me. Here's to someday. --

Dr. Stephen Hauser, who has been working on MS for decades, is hopeful that the world is on the cusp of a new era in MS. “The battle is not yet won, but all of the pieces are in place to soon reach the finish line — a cure for MS. … I think we can, in the next few years, completely suppress the disease in most people, if the proverbial tea leaves continue to point in the direction that they do today,” he said. And a cure for MS could be close behind.

And in the last decade, UCSF researchers have made incredible advances that could, one day, reverse MS symptoms or even treat the disease before it begins.

Today, clinical studies like those being conducted by the UCSF Weill Institute for Neurosciences, which Hauser directs, are investigating new ways to aggressively treat MS sooner with existing medications and new, more powerful versions. They are also concentrating on myelin repair. The Institute is applying lessons learned from MS to develop treatments for degenerative brain disorders like Alzheimer’s and Parkinson’s, as well as ALS (amyotrophic lateral sclerosis).

Excerpts from full article: "A Cure for Multiple Sclerosis? Scientists Say Within Our Lifetime."

Make your plan to vote! Sign up for tomorrow's MS Society voting webinar.

For health care and insurance, disability policy and medical research, this will be a big election. Whoever you plan to vote for, it's important to know the "how" — because every state has different voting and registration laws.

On Tues., Sept. 17 at 2 PM ET/ 1 PM CT/ Noon MT / 11 AM PT, voting expert Michelle Bishop of the National Disability Rights Network gives you info and answers questions to help you form your own voting plan. Sign up and make sure you have your say!

https://p2a.co/21fsGql

Getting Mouthy: New Device Brings Access Closer Than Ever

“There's a lot of fun things I'm doing nowadays … that I couldn't do before,” says , attorney and quadriplegic Josh Basile. Using a new device called the MouthPad, he's playing game apps with his son that were too fast for him before, and racing bots through the house with his daughter “with precision accuracy,” he says. 

MouthPad by San Francisco-based tech firm Augmental fits in the mouth like a retainer and helps you control devices with your tongue. For Basile, it works in quiet settings such as meetings and conferences, and in cars or airplanes that are often too loud to use voice recognition. Basile’s fiancée is a big fan too. “She [would] hear me say on YouTube, ‘Swipe up, swipe up’ for 30 minutes straight, and now … she doesn't have to hear that, … especially at night in bed,” he says.

Read the New Mobility story on how this revolutionary tech is helping Josh and others with disabilities — and will soon have uses even beyond those without disabilities. https://newmobility.com/mouthsticks-and-beyond/

“Help! I Need a [Wheelchair Van, Wheelchair, Rollator, Shower Bench, etc.]: A Quick and Dirty Guide to Getting Used Equipment

In the parking lot of the home improvement store, a man pulled next to us and introduced himself, apologizing profusely. He saw us shopping for flowers in the store and didn't want to bother us, but he was desperate. His father had suffered a #stroke and they were learning how to take care of him but had no easy way to get him to and from his medical appointments. How could they find an affordable van with a lift, like ours?



Needs like this often come out of the blue. With your hands full trying to cope with a medical situation, you don't have time to fool around with financing and insurance. But here are some ideas for you based on years of dealing with #

MultipleSclerosis and some pretty tight situations along the way. It will still take some looking up numbers and maybe a lot of calling around on your part. Also realize that I haven't personally used most of the places listed below, so please be careful and do your homework about any buyers and sellers you deal with. But I and others have found what we needed — in the nick of time — at these places, so good luck and here goes:

— Before we start, check if your doctors and medical professionals offer transport services to your appointments, and look into Uber WAV accessible ride-shares. These are hit-or-miss but probably beats yelling out tons of money. Paratransit services can be good but they take a long time to qualify and use.

— Starting with big-ticket items first, you'll be surprised by how many used wheelchair-accessible vans you find on Facebook Marketplace. Also eBay, but with any vehicle you have to be careful about vehicle history: Some years ago, there were a lot of very good deals there, but it turned out that some were reconditioned after flood damage. Do your homework. Finally, here are tips for buying used wheelchair vans, with links: newmobility.com/tips-for-buying-a-used-wheelchair-van

— For other equipment, check out eBay, and tell all of your family and friends to scout for wheelchairs and scooters at local goodwill, resale shops and garage sales.

— Search websites like Facebook Marketplace, Craigslist, Quipit (goquipit.com) and the private Facebook group Disability Related Gently Used Equipment for Sale (tinyurl.com/ypmc2bkc).

— Try contacting your local Center for Independent Living, which is a clearinghouse for #disability-related resources and can probably point you in the right direction.

— Look up your local chapter of United Spinal Association, which has a lot of online resources local branches supporting people with mostly mobility-#disabilities (legs, arms and such), and the local groups probably keep listings of used equipment available in your area.

— Find your local Easterseals, which often has contacts to find equipment, along with caring, knowledgeable people. Check out other nonprofits as well, like United #CerebralPalsy and Habitat for Humanity. As one of the Easterseals people told me, their funds are limited and often they're winging it, but they'll work on situations until they can help someone in need.

— Look up your state's assistive-technology agency, which may keep listings for used adaptive equipment at a savings.

— Look up used equipment at New Mobility magazine, the member publication of United Spinal. These people have been at it a long time and I guarantee you'll find articles about this or any topic related to assistive equipment and anything else you may be struggling with. For example, check out newmobility.com/what-to-do-with-your-used-wheelchair for leads to donate or find equipment.

— If you have MS, contact the MS Navigators at 800-344-4867 or contactusnmss@nmss.org. Tell the Navigator your story and ask for ideas and resources. The Navigators are trained in research and all things MS.

— Off-topic but still important: Mobility problems often go hand-in-hand with social isolation. If you are feeling alone and looking for friends and support, look to online communities like MS Connections on The Mighty (themighty.com/groups/multiplesclerosisconnections), the MS Society community group on Facebook (facebook.com/groups/nationalmssocietycommunity), MS World (msworld.org/forum), or sign up to speak to others with MS at the MS Friends program (800-344-4867 or contactusnmss@nmss.org). Hang in there, because there's community out here waiting to hear from you.

— If you have #ALS, the ALS Foundation has a durable medical equipment loan program that offers assistive items like wheelchairs, shower chairs and cushions. “We have never had to turn away anyone with ALS for any requested DME. They can come down to our chapter, and we work with a nurse or ATP to [properly fit them],” Amy Sugimodo of the Sacramento Chapter ALS Association told New Mobility. See als.org.

— The Triumph Foundation is based in Southern California but assists people with spinal cord injuries across the nation. Affiliated with United Spinal, Move United, and the Los Angeles Paralympic Sport Club, the organization takes in, services and distributes donated equipment in California, but also matches equipment for people in other states — and even gives grants for fresh batteries for power chairs. More info at triumph-foundation.org.

If you know of any others, or have more info about what's listed here, please contact me to update when I repost this next. For questions and comments, message @themightyjohn or email wheelieoutthere@gmail.com. 

A Brush With Greatness: A Farewell to Brooke Ellison

The best part of what I do is all of the diverse people I get to meet. Everyone I meet is better than me in something or another, and has something to teach me. This month I met a great one who taught me a lot.

A few weeks ago we lost Brooke Ellison, 45, a disability advocate who was a professor at Stony Brook University and VP of technology and innovation for United Spinal Association. She led an extraordinary life and I encourage you to watch this “TODAY” show profile. Along with her prominent career, she wrote a couple of books, one of which was made into a movie by Christopher Reeve; ran for the New York State Senate; and was a professional speaker and one of the first quadriplegics to graduate from Harvard University — all after being hit by a car and paralyzed from the neck down at age 11. Here is Brooke Ellison’s TED Talk: The Pillars of Hope.

Ellison and her mother, Jean, who aided her throughout the undergrad years.

I had the honor of speaking to her just before she passed. We talked for an interview on a few tech-related accessibility topics, subjects she had been working on her whole life. We had difficulty scheduling it, but I knew she was a busy person and I’m not reading anything more into it. However, once we finally got down to it, she poured out the information. In her mind was coiled a nonstop string of knowledge that unspooled into my ears. My mouthstick was throwing sparks trying to keep up on my keyboard. This is why I record interviews. It’s not just to get the quotes right — it is being able to unravel all of the points and concepts skipping past my baby-smooth brain. Tape, don’t fail me now!

Birds of a feather.

We gabbed almost 17 minutes, transferring a ton of info and sharing a few laughs. That was the best thing, that we shared a genuine rapport. We both had high-level disabilities, and I could tell she appreciated my questions that could only come from someone actually living the life. I was truly gleeful, not only to have gleaned from her exactly the info I needed to cap off my story, but also to have had a real conversation with such an authority on things that make my and many other’s lives much better.

One thing we really got into was the MouthPad, a revolutionary new device that is worn like a retainer in the mouth, to control computers, phones and other Bluetooth devices. It is a touchpad for your tongue that is worn on the palate of the mouth.

MouthPad.

The MouthPad will have uses for people from all walks of life, but in the testing phases the developer, San Francisco-based Augmental, has included many people with disabilities, including Ellison. She was the perfect person to speak to on the MouthPad too, because for years she used a forerunner of the MouthPad called the Tongue Touch Keypad.

TTK.

Developed some 15 years ago, the TTK was also worn in the mouth and had buttons like a remote control that could be pressed by tongue. Ellison used it to control her wheelchair, lights and environmental controls. However, the developer went out of business in 2011 and the aging device was “on its last legs,” she said. With time, the infrared TTK grew more and more out-of-date in a Bluetooth-heavy era.

“I felt in a lot of ways that technology was kind of passing [me] by,” she said. “My cell phone was basically like a paperweight.” How I could relate to that last comment! When I finally found a cell device I could use, it was 2022. I felt like Rip Van Cellphone.

Ellison was very excited about the MouthPad, which she thought will dramatically expand disability access across many different areas in society. “The promise is so much greater and the company that developed this technology is thinking much more broadly than the TTK ever did. … I’m really excited to see how this technology is going to continue to be integrated into many different aspects of our lives. I don’t think the limit is going to be computers (or) handheld devices,” she said. “I’m really excited to see how everything unfolds.” Ellison contributed for years on the development of the MouthPad with Augmental, and finally got a device of her own only a week before our interview. No wonder she was excited. With her unique history, she could experience the progress that’s been made on the tip of her tongue.

Two days later came word from my editor that she had passed. He and I and the entire United Spinal community were shocked. If she was ailing in some way when I talked to her, I had no idea and she gave no indication. I felt sad all day long that I didn’t get to know her better, and a lot of sympathy for those lucky enough to know her. But looking back, I’m grateful she granted me that opportunity to talk together. It was a brush with greatness. It's natural, then, to dedicate my story to Brooke. It will appear in New Mobility magazine this summer.