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  1. #1

    How much do people pay for caregiving?

    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.

  2. #2
    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)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    Thanks a lot KLD. Very helpful.

  4. #4
    Senior Member
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    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.

  5. #5
    Quote Originally Posted by mthomson View Post
    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.
    Last edited by gjnl; 06-21-2018 at 02:48 PM.

  6. #6
    Senior Member
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    Quote Originally Posted by gjnl View Post
    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.
    You said $120 per visit. Meaning $120 for 4 hours per day? Was it covered by your insurance or was it private pay?

  7. #7
    Quote Originally Posted by HACKNSACK44 View Post
    You said $120 per visit. Meaning $120 for 4 hours per day? Was it covered by your insurance or was it private pay?
    Licensed Practical Nurse was $120, now is $130 for one 2 hour visit. Price increase beginning of September.

    An HHA (Home Health Aide) or CNA (Certified Nursing Assistant) was $130 now $140 for one 4 hour visit. These hours could not be split i.e., two hours in the morning and two hours in the evening

    I have Medicare as primary insurance and a supplement policy, and routine caregiving is not covered.

    I do not need a regular caregiver, since NL does all of my care. But, there are times that NL needs down time for her own medical care. While expensive, it is the only alternative we have to our infrequent need for a caregiver.
    Last edited by gjnl; 08-27-2018 at 03:02 PM.

  8. #8
    For Anthony 36yo quadriplegic we hired a private caregiver through craigslist started at $12.00 an hour over 4 years ago, now we pay her $15.50. Although can't give pay raises anymore but did now included that we will pay her 10 sick days and 2 weeks vaca a year and will pay her if we go out of town for a couple of days or so so she does not go unpaid just because we go somewhere all this in lieu of no more pay raises. She comes in M-F mornings 9:30-2:00. We have trained her on everything, cathing, trach care, using the electric hoyer lift, etc. Anthony is pretty complex with no voice, trach complete care. She also used to do overnights and live in when we (mom and dad) would go on mini vacations but can't do that anymore because she took in 3 foster kids! Anyways we use trust funds to pay her privately. Also Florida has a medicaid waiver program that Anthony became eligible for about 10years ago maybe less he was on the list about 4 years after being approved for Medicaid. They have a program that allows him a weekly allowance of 40 hours for caregiving and you can hire family and that is me. It pays me $14.50 an hour. That is only because I was grandfathered in from an old program and had to fight fight fight for the bump up to 40 hours a week. I think now if you start out in the program they will only pay what they would pay an agency and I think that is $12.50 hr.

    I just started looking for an additional caregiver to come in one day a week for the 9:30-2pm shift and relieve his main caregiver so she only has to come in 4 days a week and also because she can't do the respite care during the year anymore I need someone for this. I'm putting that on another thread . . . .

    I found a site called carelinx.com, they are not an agency but kind of an agency after looking though dozens of caregivers it looks like the going rate is $15 in the Tampa area. Some crazy ppl are asking $20-$30 and that is to care for elderly like run errands, "manage household", companion care. I'm finding it hard to find a venue to hire privately without going through an agency. And the problem with going through an agency is they don't "allow" their caregivers to do hands on caregiving like suctioning, intermittent catheterization, i'm not sure if their RNs do or not, but can't afford an RN for the times I want and Anthony needs that.

    I have in the past had agencies send someone out and they do what I ask them to do anyway, like suctioning. I am always here though to supervise at the beginning.
    Cindy Waters
    mom to Anthony, right c5, left c4 (24yo)
    injury march 2003

  9. #9
    Senior Member
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    Quote Originally Posted by gjnl View Post
    Licensed Practical Nurse was $120, now is $130 for one 2 hour visit. Price increase beginning of September.

    An HHA (Home Health Aide) or CNA (Certified Nursing Assistant) was $130 now $140 for one 4 hour visit. These hours could not be split i.e., two hours in the morning and two hours in the evening

    I have Medicare as primary insurance and a supplement policy, and routine caregiving is not covered.

    I do not need a regular caregiver, since NL does all of my care. But, there are times that NL needs down time for her own medical care. While expensive, it is the only alternative we have to our infrequent need for a caregiver.
    I understand that. You have to do whatever it takes.

  10. #10
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    Quote Originally Posted by mthomson View Post
    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

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