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Hi,



We're in need of physically strong at home caregivers who can do max assist stand pivot transfers & other lifting for a patient who cant get to standing on their own. They have a movement disorder (Parkinsonism), Pisa Syndrome (severe lean to their side), & advanced dementia (cant do almost all ADLs). Ive seen some well off families seem to have found private caregivers, not through agencies, that they directly hire to do this. I've seen on other forums that family caregivers recommend hiring former army medics, strong men/women (a family posted on another forum they apparently found success with caregivers who have backgrounds specifically from Southeast Asia, such as from Samoa, Philippines, etc where they're known to be physically fit/strong). I'm wondering the process for finding these caregivers online/elsewhere & how they're hired. I get the sense these wealthy families are directly hiring the aides as their employees and as I understand it are thus responsible for payroll, payroll tax, all legal implications of the aides being their employees, etc. I havent found any guidance/resources/organizations/information online who provide families with any tips on even how to practically hire these aides (such as what you'd need to set up thru a lawyer such as an employment agreement). I imagine these aides may be paid an annual or monthly salary versus hourly (like with agencies), as it seems they're providing care every day-including travel with the family (including single caregiver transfers of patient from their wheelchair into the passenger car seat) & advanced skills like feeding tubes, etc. For us, we need physically strong aides who can lift on their own our loved one from their wheelchair to their hospital bed, from bed to their manual transport lift, lift to toilet (if we get back to using that, as our loved one cant stand up from toilet & it takes 2 of us to pull them up). We've looked into the electric sit-to-stand (STS or SARA) lifts that use a sling to help get our LO up from a seated position, so the aide would have to be skilled enough to use a lift and sling like that too.



We havent been comfortable with the quality and physical ability of the aides thru agencies (often older women who aren't able to do any type of transfer or seem strong enough to use the manual transporter lift or transfer patient onto sliding shower chair for weekly showers). We even shared a video on how to do a stand pivot transfer before starting with a new 'high end' agency & even after assuring us their CNAs were trained, she wasnt



We tried facilities but the quality of the care there was also so poor (and staffing ratios so horribly dangerous) we didnt pursue the electric sit to stand lift there & didnt even feel comfortable with their rotating untrained aides using the manual transporter lift. Our loved one leans heavily to one side (Pisa Syndrome or PS or pleurothotonus) as part of their poorly defined Parkinsonism movement disorder, so you have to be strong enough to transfer them and get them standing while they're leaning their full body weight in often the opposing direction youre trying to transfer them to. We have the monthly budget of what the facility cost, so I feel like we should be able to find stronger, skilled caregivers at home that we can pay directly if needed. I've also heard that if you hire caregivers directly, they're more likely to stay/there's less turnover, as they get paid directly & keep more of the money versus going through an agency who takes out a significant portion of the hourly wage (without providing benefits like paid sick leave etc).



Thanks for any help or places folks can point us to to try to learn more-ideally we'd prefer not to have to do the work of setting caregiver(s) up as our employees, but if that's the only way to find the physically strong aides we need, then I just want to understand how to find them & how to set them up (through our lawyer drafting documents?) as employees.



T

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It's a good idea - in theory.
But is it a workable realistic plan?
Or a wishful solution?

Your LO's mobility problems has meant a sit-to-stand lifting machine is not safe, due to leaning &/or stiffness. Therefore your LO's options are;
1. Hoist lifting machine for transfers
2. Being bed-bound

Hoist machines are large, hard to push on carpet, usually need two people to safely operate (place the sling, lift & position person).

Care for bed-bound people often takes two people also (rolls, bedbaths, hygiene).

Home care with 2 x assist is very hard + $$$$. So the idea of ONE, very STRONG person is a good idea.. but is it possible?

You will need a team as no-one person works 24/7. I've seen it done with 2 as minimum doing 12 hr shift each. But mostly with 3 or many more staff rotating.

Your situation would need;
All to be exceptionally strong.
All to be trained (or trained by you).
All to be willing to do such physical work that most others would say was the work of 2 people.

What would you classify the the risk of injury to a solo caregiver & your LO?
Low / Med / High?

What would you estimate the outcome of an injury to be?
Mild / Moderate / Serious?

What is the risk of a compensation claim against you for not providing a safe workplace?
Unlikely / Likely?

IF you can get this plan to work - Find these willing & able people, how LONG is your aim? Until end of life? Or just until you MUST employ 2 x assist anyway?

** Is this is short-term solution for a long-term problem** ?

What actually is your wider aim?

You have listed things you don't want (eg NH) but clarifying what your aim is may help guide you.

Is it for your LO to *be at home*? *be safe*? *be cared for* or *be loved*? Or something else??
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I agree you’re not looking for CNA training level caregivers. My mother was a two person assist for every move. She wasn’t a big person, yet we couldn’t accomplish it outside a nursing home setting. The only idea I can think of for a home setting might be using male students who are majoring in subjects like physical therapy or nursing and in need of part time employment. I wish you the best in such a tough situation
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From what you described this is rather advanced stage.
And by Parkinsonism definition and Pisa Syndrome could be Multiple System Atrophy which is much worse than Parkinson as medication don’t provide much relief and autonomic functions are affected.
Although dementia is rare with that specific disorder.
I am not trying to diagnose somebody, just saying what neurologist told us long time ago, better to have Parkinson’s than Parkinsonism which is so much worse and progresses at rapid pace.
My husband who was diagnosed with Parkinson’s which now is Parkinsonism. I know it will be much worse.
It seems to me from what I read about your LO it will be impossible to continue unless you find 2 strong men to help around the clock.
If my husband becomes two persons lift arrangements are made for facility, for his safety and mine.
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I cannot guide you in seeking caregivers, but I would caution you if there is "heavy lifting" that injuries can happen and you can suffer law suits. Do check your homeowner's insurance and your umbrella policy and to be honest I would discuss precautions with an elder law attorney before going through all these steps.
I wish you luck.
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