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Thread: Advice + looking for caregiver for C2-C3 quad in Northwest Indiana (Chicago area)

  1. #1

    Advice + looking for caregiver for C2-C3 quad in Northwest Indiana (Chicago area)

    Dear Forum Colleagues,
    Everyone on here has had some experience with the notorious task of finding the right caregivers I am sure. My Dad is a C2-C3 quad, is 69 years old, and is almost 7 years post injury. We have had our share of trials aned tribulations. We have had good experiences and bad experiences but unfortunately, a lot of people take advantage of my Dad (and Mom, as the primary caregiver) because they know they are dependent and aging. Apart from Craigslist and local agencies, where else can one find reliable, genuine, caring help?? (Live-in or otherwise?) My Dad needs 24/7 care due to trach care. It's so sad to watch a caregiver tell my Dad that she won't go get my Mom for tea because she is too busy. (My Dad can't get up and go get his wife himself because he can't walk!) Also, sometimes caregivers decide what they want and don't want to do. Is this fair? If my Mom and Dad want a cup of tea and the caregivers are being paid well, then can't the caregiver get tea for both of them? They are both aging and my Mom, as primary caregiver/personal care assistant, who also pays all the bills, is tired because she does everything. She is a HR manager, house manager, doctor herself, wife, mom, everything. Someone please help shed some light on how to manage this situation and where we should seek out some reliable help.
    Meanwhile, good luck to everyone!
    Thank you.
    daugher of Dad with SCI

  2. #2
    I suspect your lack of a profile, and no indication of your location (country, state, city, etc.) is inhibiting any response to your first post on this forum.

    Who pays for the caregivers?? Agency?? Private pay?? Government program??

    Who determines their job description and is there an employment contract??? What are the duties described in these documents?? What was included in expected duties when interviewing/hiring?

    Did you tell them during the hiring process that they would be providing care and services for both your mother and dad?? If outside funded, were they approved to provide services for both?? If not, it would not be fair or reasonable to expect PCA to care for both your parents. If that is an expectation, I suspect you are going to need to renegotiate your employment conditions, and/or find another person to care for your mother, or let this person go and start fresh with looking for someone for the job who knows going in that they are expected to do both.

    What do you pay?? You are not going to find a lot of people who are willing to take on the care of two people for the same pay that they would get for only one, esp. as these are usually relatively low paying jobs with no benefits.


  3. #3
    I totally understand your frustration. It is very hard to find good caregivers.

    My father is a para, 5 years out, 70 years old. He is much less disabled then your father, but has many additional medical problems and a traumatic brain injury/cognitive issues.

    KLD has great advice because she is very experienced at this. But we are still "beginners" despite the years since the accident, and often feel helpless. I also have a hard time finding the right balance with caregivers of having reasonable expectations, without alienating them, and without alienating my father. It is a very difficult dynamic. Honestly, I hate it.

    Of course it is silly that someone who is there can't give your mother a cup of tea, regardless of job description. But it is also hard if both of your parents have significant needs, if she is juggling multiple things at the same time. I don't know your situation exactly, of course. I don't know the answer.... For us, it meant I stopped working to care for my parents.

    When my father was first in inpatient rehab, I went to the best PCT that my father adored and asked if we could hire him! I was half-joking since I knew we couldn't afford him (he was that good!), but did ask his advice about how to find someone to help. He said we have to interview 100 people, to find one good one.

    Some places that people have recommended looking are local nursing schools, where exchanging room and board might get you some extra help. We have only hired through agencies so far (only a few hours a week), hoping their "pre-screening" would help, but it doesn't. I would also think about asking around your church (if you have that sort of community - we do not). Sometimes friends/family of caregivers that work with others you know can be more reliable options.

    Sorry I can't be more help.

  4. #4
    Senior Member zillazangel's Avatar
    Join Date
    May 2004
    North Carolina, USA
    If you are private paying an aide, then that aide needs to do what s/he is TOLD TO DO. If that involves getting a cup of coffee for your mother and father both, then it needs to be done, no bitching about it and no attitude about it. If it is an agency, it's a different story. But if it's private pay, then do the *#*&% job, and THEY define the job, is my opinion.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  5. #5
    Quote Originally Posted by smashms View Post
    Just a question if your mom is primary caregiver then why do they need a PCA? The PCA should only be needed when your mother can't do something or needs help or to go to a doctor appointment or wants a break in which case these should be pre arranged. If she is not primary caregiver then this would explain the need for the PCA or nurse 24/7 . And why can't your mom get up and get her own tea? Sorry for the harshness but your fathers caregiver should not be expected to care for both of them.
    I really wish people with no caregiving exposure or experience would stfu in this forum. Caregivers are paid to do WHAT A CLIENT CANNOT. Do you think this man wouldn't make his wife a freaking cup of tea?? Seriously, maybe after you take care of someone 24/7 you'll have something useful to contribute, but until then, you are simply being an ignorant troll.

  6. #6
    Senior Member Van Quad's Avatar
    Join Date
    Mar 2002
    Vancouver, BC, Canada
    what Scaper & Zilla said! That employee (cannot be called caregiver) needs to hit the road.

  7. #7
    Senior Member
    Join Date
    Jul 2008
    Northern Calif
    tell that caregiver to hit the road last tuesday!!!!

  8. #8
    Senior Member ~Lin's Avatar
    Join Date
    Nov 2011
    Indianapolis, IN
    Quote Originally Posted by SCI-Nurse View Post
    I suspect your lack of a profile, and no indication of your location (country, state, city, etc.) is inhibiting any response to your first post on this forum.
    The title says they're located in NW Indiana near chicago.

    I know nothing of caregiving so I can't help, but hello from a fellow hoosier. I was born in Munster and grew up in Crown Point, and my dad still lives in Valpo. I believe my mom is in St John now.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  9. #9
    Quote Originally Posted by smashms View Post
    I understand that but if the wife is there and according to him the primary caregiver then why can't she make the tea. For herself. If the tea is for him then the caregiver is wrong in telling him no. If she is able and taking care of him then she should be making it herself.
    The fact that you're so hung up on the term "primary caregiver" suggests you don't understand at all. It's not some sort of absolute title like "supreme leader." It only denotes the person who is dumped with the bulk of someone's care. The person who is there every day and night, trying to balance a grueling caregiving schedule with all the other demands of running a home, being a parent, employee, spouse etc. Paid caregivers are basically there to offer that person respite. Making an extra cup of tea for them is in no way an inappropriate request.

    I love to make meals for my family with the help of my caregivers. They are paid to perform the physical tasks I cannot do myself, care or otherwise (within reason of course). I can't even imagine my reaction if one said, "sorry, I'll cook for you, but I refuse to make anything that you might share with your loved ones." Anyone with that attitude needs to find a new career field, stat.

  10. #10
    And geez.... the "primary caregiver" in this rough situation is likely about 70 years old! I can barely manage it and I'm half her age. She doesn't need just tea.... she needs to be lifted up by doves, fed strawberries and chocolates, and sung to by angels.

    Of course, this is what I have my father's home care worker do for me once a week.

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