What do you call a sexually voracious middle-aged healer, a closeted anti-vaxxer who claims to work in COVID-19 vaccine development, and a self-described “modern Buddhist/artist/neuroscientist”?
If you guessed “three of the top candidates from over three months of frantic searching for a live-in caregiver,” you win the prize. I wish I had a funny punchline here, but the sad fact is there is nothing funny about the current caregiver shortage in America.
If you rely on caregivers, you are probably all too aware of this. For the last few years, the chorus of frustration from people seeking help has gotten louder. I’ve heard from readers worried they won’t be able to stay at home, friends unable to get together because they can’t cover a shift, and too many people forced to press their friends and family into unwanted responsibilities.
Thanks mainly to luck and good fortune, my caregiving team remained stable through most of the first two years of the pandemic. I managed to find an ideal hire the one time I had an opening, but there were underlying signs of the trouble to come. The ads and postings that typically returned a bounty of good candidates only elicited a few responses. Outside of the woman I hired, there wasn’t a single person I was excited about.
Still, those signs didn’t prepare me for the response I received during my most recent caregiver search. I would have happily settled for one good candidate as I repeatedly clicked the refresh button on my email, hoping more people had responded to my ads.
Despite doing more personal outreach and posting ads in more places than at any point in my 24 years of hiring, all I had to show for my efforts was an undersized pool of would-be caregivers that was, ironically, overwhelming. I didn’t particularly want anything to do with any of them, but when you need a caregiver, you need a caregiver.
That’s how I ended up interviewing the aforementioned “healer” and closeted anti-vaxxer. The former wasted her opportunity when she started flirting with one of my current caregivers during our interview. The latter recused himself by telling me he’d “decided not to get any more shots” after briefly considering getting vaccinated when I told him the requirement was non-negotiable.
The individual anecdotes are funny, but collectively they paint a picture of the desperate and depressing reality confronting so many of us. Do we settle for mediocre or sub-par care or stay home, often in bed, and suffer?
Without good caregivers, we tend to disappear. If we’re lucky, maybe we just miss a night out with friends because we don’t have a caregiver to drive. If we’re unlucky, a negligent caregiver’s mistake lands us in the hospital or on extended bedrest. If we can’t find anyone, assisted living and nursing homes loom. This is what keeps me up at night when I’m down a caregiver.
Thankfully, I finally filled my opening. While my caregiving nightmare is at least temporarily over, three friends independently reached out to me in the last week for advice on procuring their own help. Aside from urging them to be creative and persistent, I’m at a loss for what to tell them.
The caregiver shortage in America is real, and it is not going away. If we want to ensure that we can all live the active lives we want, we need innovative solutions and leaders to help implement them.
We shouldn’t have to be lucky just to get mediocre care. We shouldn’t have to worry about disappearing.
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Same here. Very frustrating. Travel plans cancelled. Looming concerns with even the quality of facility care, lack of knowledge, and skill. Scary.
Ian,
I think we are going to have to put together focus groups of caregivers to identify their needs and the intersection of what we need. I live in constant fear and sometimes actual situations that require me to forgo the care I need or tolerate dysfunctional, bordering on abusive care. I have spoken with one family who have adopted several special needs children they need help to care for and are considering moving to another state. Unfortunately, this is a systemic problem that is going to require some out of the box thinking and creative trial and error solutions. I wish there was an easy answer, but there isn’t – yet! My mind is in constant overdrive and searching. I have some ideas and am planning to contact some of my researcher friends for suggestions from different perspectives. I have been thinking about this since reading your last post. Let’s keep in touch and see where this goes. Thank you so much for helping me understand that I’m not alone in this!
Best,
Carla Steinbuchel, MN, APN, CCRN, CNS, PNP-BC
With fast food jobs paying better than the state pays caregivers for disabled people the crisis is never going to end. $12 to $14 per hour here in Iowa is all they get.
As a Para I depend on my caregiver 3 times a week. It used to be 7 days a week but they keep leaving the OPPRESSIVE company they work for. By the way that company is the largest caregiver company in the USA.
They track the caregiver by their phone app and GPS, accounting for every second of time and exact mileage. Insufficient time is allowed to drive between jobs, NO time for lunch breaks are scheduled. Only rude oppressive office workers contact them.
They are NOT allowed to communicate with other caregivers or discuss client care. They are NOT allowed to utter a word to a client about what happened to caregiver Mike or whom ever. Clients have to message a caregiver by calling the office and put up with the rude and often very incompetent ivory tower persons.
If a caregiver is off by a few minutes, or miles they get a nasty gram email that they are not doing the job correctly. Further, they are paid only a very small portion of the amounts reimbursed by Medicare, the state, insurance or whomever foots the real bill. They are GROSSLY UNDERPAID for the sometimes brutal labor they have to do and management CRAP| they have to put up with.
It is NOT surprising to me that we have a real caregiver crisis. Some PERSON in GOVERNMENT MANAGEMENT should step up to the plate and champion these heroes. Wishful thinking with the incompetence exhibited by today’s government
The caregiver industry is grossly over paid for it’s “MANAGEMENT” of the caregivers. Perhaps it is time for Federal Controls and limits on the Billions given to those in the ivory towers, and giving the caregivers a real and deserving living wage somewhere in the $30.00 PLUS an hour AND FULL BENEFITS for the dirty work that they have to do every day.
John,
I heard the most ludicrous information yesterday regarding how agencies are treating caregivers. People in these agencies have constant turnover in leadership as well as no leadership training and little respect for their employees. Communication and Followup with caregivers is not standard of practice. Honestly, this is not entirely these leaders fault. They have not been given the tools or training to succeed in the positions they hold. Back to yesterday, if a caregiver has a flat tire, calls to let staffing know they are going to be late, the agency requires that they take a photo of the flat tire. If they have a death in the family, they have to submit a photo of the obituary and receive no paid bereavement time off. Apparently, this is only the tip of the caregiving iceberg. Difficult to know where to start.
Imagine those of us who lack the finances to directly hire caregivers?
Besides my loving wife of 30 years, I depended on my HMO Insurance to provide me with a caregiver. Even when I settled on 2 hours, 3 days per week, I only got 1 hour, 3 times per week for a yearly total of 80 hours. After failing to get more time, I stop trying. Now, I only bathe on Saturdays. My wife works as a Homehealth Physical Therapist Mon-Fri from 7 am -6 pm, then get home to turn me, empty my ileostomy pouch and urine bag, serve me dinner, take a shower, eat her meal, and write patient notes until 11 pm, come to bed, wake up at 6:30 pm, prepare to go to work, empty my ileostomy pouch and urine bag, help me with light hygiene, turn me on my side, serve me breakfast and lunch on a tray, leave for work.
The sad reality is that people on Medicaid (many of whom never worked a day in their lives) get 5-8 hours daily, 5 days per week. As several caregivers have told me, they prefer those cases as cases like mine in which they need to drive from patient to patient up to 8 times to make a decent earning per day.
The State, Medicare, Senate, and Federal governments need to step in and resolve this issue.
I hear you Bruno. I think about this constantly and realize how little separates us all. It is scary and depressing.
Ian thank you so much for posting this. We all have been through this and we can not pay anyone privately. Medicare and Medicaid is my only insurance. Let’s all get working together about the caregiver issues.
Bruno,
Your life sounds like mine. My wife also WAS a Home Health Physical Therapist for 30 plus years. I have been living life from a chair for 43 years and a very active at that until 2018 when I got T-boned. As a result of this I eventually ended up in the hospital for 9 months. The first 5 in CCU and 4 in Rehabilitation Hospital. Made it home on a vent and Oxygen and dependent on caregivers. Sad part is I was only allowed a RN and her specialty was vent dependent people. I was lucky to have her after my first caregiver told me, on his very first day he had to make a phone call, went out to his car and left. I called my wife told her what happened and she had one more patient then she would be home. I know this was risky but I had to suction myself once because of being a C5-C6 Quad I was not able to cough. Fortunately my wife was by my side while I was hospitalized and learned everything she could about my care. When COVID hit I lost my nurse because she had a special needs child. My wife was laid off and started taking over my care. We were in danger of losing our house and everything we worked for. I could go on and on but I will sum it up with this. We fought for almost 7 months to get my wife paid as my caregiver. We worked together and got me weaned of the the vent and healed up the pressure sores. With some supporting letters from Doctors, Respiratory Therapists and much deserved Support from Senator Bob Casey, Pa. and Representative Cartwright and huge support of United Spinal Foundation. We were able to get spousal caregiver pay $12.00 an hour falls way short of what my wife use to make and I was no longer able to work my part time job. Unfortunately we are going to have to fight the big fight again even though the Public Health Emergency was extended again.
The description of people “disappearing” really resonated–sometimes it’s framed as black and white, at home or in nursing homes, but there is a way of disappearing without caregiver access that is somewhere in between. Thanks for this piece. Also want to highlight that there are campaigns to raise wages for caregivers to help address the caregiver crisis. I know about an amazing campaign in NY from the NY Caring Majority (https://www.nycaringmajority.org/) and right now in LA where I live (https://tinyurl.com/HomecareLA) These campaigns only win because of powerful testimonies like these and others in the comments.
Thanks for the links. We will do more on this for sure.