How much do people pay for caregiving?

[mamadavid]

Hello everyone. I'm doing some research on the cost of daily necessary care in different parts of the world for people with different levels of SCI. I would really appreciate any information on what type of care you need/receive (assistance with bowel programme, catheterisation, showering, dressing, skin care / pressure sore prevention and treatment, meal preparation / assistance with eating, evening care, etc.), how much this costs (in North America, Latin America, UK, Europe) and who pays for it (self, government, private insurance). How happy / unhappy are you with the care you are getting? What about family members providing care? If you coud steer me to any other sources of information on this subject I would appreciate that too. Thanks in advance for taking time to answer.

[SCI-Nurse]

My mother, who was triplegic due to MS, did not qualify for state funded attendant care (in California this is called In Home Supportive Services, or IHSS). Private insurance rarely, if ever covers attendant care, and neither did her Medicare. Worker's Comp may pay for some, and a few people have long-term care insurance which may cover some of this (but my parents did not have either). Certain disabled Veterans are eligible for varying levels of attendant care through the Veterans Health Administration (this also was not applicable to my mother).

My parents had to private pay for her attendant care. She employed attendants in increasing numbers of hours as her MS progressed, from 1999-2012. One lived in and was paid a weekly wage plus in-kind payment of board and room. She was on-duty from 2230-1300 Monday-Friday, and 2230-0730 on weekends. The others were hourly part-time, and we started out at $12/hour and went up to $15 by the time she died. We had two people daily part-time toward the end of her life: 0800-1400 on weekends, and 1600-2000 shifts 7 days/week. Her attendants did transfers, bathing, bowel care, intermittent cath, range of motion, and skin inspection, plus prepared meals after my dad died in 2008 (he had done the cooking prior to that), plus grocery shopping. In her last year, they also had to do medication administration and feed her. After my father died, they also did all the driving of the van (which he had done before) and taking her to doctor's appointments, to the movies, or out to restaurants to eat.

(KLD)

[mamadavid]

Thanks a lot KLD. Very helpful.

[mthomson]

I've been a C6/7 quad for 32 years and have had several different variations on caregivers. My family for the 1st 7 years. Then I got married, and my wife and I handled it for the next 10 years, until she passed away. For the last 14 years I've been paying out of pocket for a CNA friend to help out.

She comes every morning. Every other morning it's bowel program and shower. With the exception of inserting the suppository I do everything else myself. Transfer onto the shower chair, roll over the toilet, roll into the shower, roll back out, transfer back onto the bed. The transfers are ugly because I'm old and my shoulders are shot Every morning she gets my pants, socks, and shoes on. I handle the shirt.

Every evening she helps me transfer onto the bed, a minor boost by grabbing the waistband of my pants while I push up and pivot. She comes 4 evenings a week, my dad supplements the other 3.

Shower mornings she's there for 1.5 hours.
Non shower mornings she's there for 15 minutes.
Evenings 15 minutes.

I handle everything else during the day.

I pay her $150 cash a week for her help.

[gjnl]

I've been a C6/7 quad for 32 years and have had several different variations on caregivers. My family for the 1st 7 years. Then I got married, and my wife and I handled it for the next 10 years, until she passed away. For the last 14 years I've been paying out of pocket for a CNA friend to help out.

She comes every morning. Every other morning it's bowel program and shower. With the exception of inserting the suppository I do everything else myself. Transfer onto the shower chair, roll over the toilet, roll into the shower, roll back out, transfer back onto the bed. The transfers are ugly because I'm old and my shoulders are shot Every morning she gets my pants, socks, and shoes on. I handle the shirt.

Every evening she helps me transfer onto the bed, a minor boost by grabbing the waistband of my pants while I push up and pivot. She comes 4 evenings a week, my dad supplements the other 3.

Shower mornings she's there for 1.5 hours.
Non shower mornings she's there for 15 minutes.
Evenings 15 minutes.

I handle everything else during the day.

I pay her $150 cash a week for her help.

Have you thought about getting a patient lift for your transfers? It would make it a lot easier on your shoulders and easy for your caregivers to assist with the transfers.

I understand that your transfers or caregiver assisted pivot transfers may be faster. I am facing having to use lift transfers instead of NL's very efficient pivot transfers for a time, while NL is recovering from cataract surgeries in August and September. Medicare and most private pay insurance will cover a simple hydraulic lift with a sling. All the paperwork has been done and I expect to have it in several weeks, so we can set up the bed to accommodate the lift and practice transferring. We will have to raise the bed a few inches to accommodate the lift.

Sorry to digress from the original of this thread.

Meanwhile, we will need about 4 days (each surgery) of caregiver assistance, two hours AM & two hours PM at a cost of $120.00 per visit though an agency. I don't see any alternative to this expense since our need for a caregiver is such a short time. A licensed practical nurse (LPN) will be the caregiver. I know it may seem like an unlicensed caregiver may be less expensive, but because of minimum hours for types of caregivers, it turns out to be less expensive for an LPN for 2 hours than an unlicensed caregiver for 4 hours. We don't have a clue what we would do with a 4 hour caregiver, twice a day. As NL says, it isn't like she is in a coma or totally incapacitated. We have discussed our situation with her surgeon, and he has "approved her for duty" after the 4 days.

[mthomson]

gjnl,

1 day I may very well need a lift, but I'll hold out as long as possible

thanks for the info though.

mark

[gjnl]

gjnl,

1 day I may very well need a lift, but I'll hold out as long as possible

thanks for the info though.

mark

I understand what you are saying. If it weren't for the surgeries that NL is having in a couple months, I wouldn't be getting a lift either. NL and I are both looking forward to having those surgeries behind us, and we will put the lift back in the box and store it in the garage.

[vjls]

I pay 12 hr for 1 hr 5 day aweek I ned minimal help help transfer to bath chair the help cleanng I cheat have her pu groceries 2 times a month

[vjls]

I've been a C6/7 quad for 32 years and have had several different variations on caregivers. My family for the 1st 7 years. Then I got married, and my wife and I handled it for the next 10 years, until she passed away. For the last 14 years I've been paying out of pocket for a CNA friend to help out.

She comes every morning. Every other morning it's bowel program and shower. With the exception of inserting the suppository I do everything else myself. Transfer onto the shower chair, roll over the toilet, roll into the shower, roll back out, transfer back onto the bed. The transfers are ugly because I'm old and my shoulders are shot Every morning she gets my pants, socks, and shoes on. I handle the shirt.

Every evening she helps me transfer onto the bed, a minor boost by grabbing the waistband of my pants while I push up and pivot. She comes 4 evenings a week, my dad supplements the other 3.

Shower mornings she's there for 1.5 hours.
Non shower mornings she's there for 15 minutes.
Evenings 15 minutes.

I handle everything else during the day.

I pay her $150 cash a week for her help.

fyi just a thought get a colonosty I am c6/7 that is easy just me you are better than me I can not transfer bare butt to shower chair but bed the only way I can get in is I have a loop I transger get loop and roll in only way I can fyi your pretty awesome

[crags]

I live in New York and good luck getting anybody in your house for less than 20 bucks per hour. That is, if you want good help to stay. Overnight one can pay less because the duties are less, but it's still a huge burden.