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Thread: Caregiver burnout? What about "quad" burnout???

  1. #1

    Caregiver burnout? What about "quad" burnout???

    Tonight I just realized that I'm not depressed - I'm totally TOASTED with this 24/7 caregiver crud, and I'm not the caregiver!!

    I'm tired of hearing about how tired they get. What about the crap they put ME through? They get to go home. They get to run and jump and skip and play and get their own drink of water and share the bathroom with NO ONE!

    Maybe they get tired of taking care of us, but do they realize how tired of being taken care of we are? Don't they think we get tired of hearing their whining excuses for being late? Maybe we've already heard that excuse 42.7 times, this month! Tired of their bad breath? Tired of their hands touching us? Tired of having to explain the same thing over and over, again and again, day and night.

    Sorry, but I'm tired. Tired of them questioning us WHY we want our bologna on that kind of bread. Are you sure you only want mayonnaise? You want HOT water?! And the classic know-it-all, "well I'm sweating too, dear. Good Lord, it's 85 degrees outside!"

    You know, just shut your mouth and leave the Lord out of this!!!

    Sorry, I guess it's all added up after 17 years of this happy land some call Quadville. 15 years as a single mom, hasn't helped.

    I'm as close to a full-fledged quad as they get, without a respirator. Being left alone a couple of hours isn't an option anymore; sudden unscheduled attacks of dysreflexia, you know. I just want to say; don't talk to me, don't ask me, don't tell me, don't look at me, don't touch me - YOU'RE NOT MY MOMMY! And don't breathe in my house!

    Anyone have any suggestions [besides go hide in my closet, which doesn't work anymore cuz they all know where to find me] how to douse this major burnout I'm experiencing?

    Sometimes I just want to kick and hit and scream and cry; but then WHO gets to dry my tears, and who gets to feel bad for hurting someone's feelings?!

    I'm done now.

  2. #2
    Senior Member martha's Avatar
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    ????

    Cindyg, you and everyone in your situation have my heartfelt empathy and respect. Your circumstances are worse than "difficult" and there is no way that me or anyone else who has not suffered as you have can know what it's like. And it would be horrible to be dependent upon another for so much. BUT, I think you confuse the caregivers who post on this forum with professional PCA's. We aren't. No, we don't go home -- we ARE at home. This isn't a job that we leave after a shift. This is a 24/7 dedication to someone else's health and wellbeing which often falls on top of the paying job we must have. I'm not late to work -- I'm in the next bed reaching for the alarm clock every two hours to turn him or help him cath. I don't remember the last time I ran and jumped and skipped and played. It was probably at the same time as the last time my husband did. And we are not immune from the effects of SCI that plague our family members. While our bodies might not suffer the same symptoms, they do suffer also. And given another month of lifting him, we'll probably be in matching wheelchairs anyway.

    martha

  3. #3
    Cindy,

    Martha's right in that most of the people who post here are family caregivers; but, I absolutely understand what you're feeling; my son is a C4-5 quad, so in much the same boat you are, re AD, 24/7 'someone in the house, kind of thing, and needing assistance with a lot of ADLs. We went through 6 home health aides the first six weeks my son was home from rehab; each was more incompetent than the last! When we left rehab, our social worker there was SO excited because Medicaid had approved us for an aide 8 hours a day, 5 days a week, and I could 'go back to work' - lol!!! I didn't dare leave my son in the care of these useless people even to go to the store; my husband and I ended up caring for my son 24/7 for over a year, when we finally found a wonderful young, intelligent woman privately. She does the most wonderful care, and has become my son's older 'sister', but the feelings I have are that there's always someone in my house - in MY kitchen!! - in the middle of doing his laundrey when I wanted to throw a load in, etc. - sounds like whining, I know, but it's just a huge intrusion on everyone's life, not only for the person being cared for. I know that my son feels some of the things you do - I can see it in his face, sometimes.

    The home health aide situation in this country is just pitiful; they are the lowest paid, least trained of any health professional, and yet they are the ones who are the 'first line of defense' in an emergency; scary, isn't it? I'm about ready to get politically active about it, although with the state of health care, insurance, etc., I'm sure this is low on the list of priorities.

    I can't imagine being a single mom, and dealing with kids and being in a chair - God bless.

  4. #4
    Senior Member BJ's Avatar
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    Quad Burn Out

    I spent a year as a livein aide for a quad 20+ years ago, hubby was finishing college and a friend needed help. We spent a few hours discussing expectations. I was hired to be the driver, the maid, the cook and PCA. I had my own room with TV and phone. I was not there to question how he wanted something done or why he wanted it done but just to provide the services he hired me for. Yes we socialized but we had seperate lives. If he entertained I set out the food and went to my room. If he had a date, I droped them off somewhere and left - he called when he was ready to come home. If I invited someone over it was usually when he was out, or we stayed in another part of the house. The paid care giver needs to understand that have no control over your live and how you live it. They are paid to provided x service and that it. As with any employee they have set hours and should be there on time. I know that hard part (impossible part) if finding some one with a work ethic who is where they are suppose to be when they should be there.

  5. #5
    Hello again. It's morrning and I have calmed down; my attendant finally showed up last night.

    I appreciate your replies. You're right, this forum is more for the caregiver who is just as confined as the one being cared for. Martha, I am sorry if I offended anyone; I was angry with the people who get paid an hourly wage to "work" here.

    $144/day to eat my food, watch my tv, use my shower, use up my band-aids, eat my aspirin, break my stuff, intrude on my life, etc. Sometimes it's way too much; but when my body gets in trouble, Marmalady is right, I am so thankful that some of them are here. Others, well...

    I was fortunate enough to be able to choose to live an independent life away from my mom and my sister. I always felt like such a burden for them. I couldn't see how they were supposed to work AND take care of me. So my anger with the incompetance of today's working class, was brought on by myself. Guess I'd rather be tired of hearing "huh?" out of a srangers mouth every time I say something, than frustrated at family.

    Marmalady, I think those who are caring for a family member and also get the "joy" of hired help, understand me/us better than anyone else in the world. I feel smothered and invaded, as you do. And this being MY home, I know EXACTLY what you're saying about people in your "space."

    Tag, it sounds like you and your quad friend had a beautiful understanding. My aides only work 1 to 3 days at a time. One is as you said, stays out of my life. She's here 3 and 4 days whenever possible. The other 2 have big comprehension problems, and the one thinks she's family. She's the one that's always late, needs to wash a load of her clothes cuz she forgot she was supposed to be here and came unprepared, after 3 years still has to be told every move she's supposed to be making, would forget her own name if I didn't have to say it continually to keep her on track...blah blah blah. I can't seem to get her replaced, BUT she is also the one who will come at a moment's notice if there absolutely is no one else.

    Anyway, I definitely feel for family member caregivers. SCI is bad enough, but to have to affect so many others so severely also, it's just not fair. You too, have my respect and compassion. I suppose this posting belonged somewhere else, or maybe I have caregiver burnout too; burned out on finding and training caregivers. Burned out on doing my own caregiving through the use of other's hands.

    God bless you all.

  6. #6

    Burnout -both sides!

    Hi, Cindy,

    You are welcome at this forum any time! Gave us all another perspective to look at!

    Question - WHY is your aide using your shower, washing her clothes, etc.???? That seems way out of line, unless she has a special circumstance and you offered out of the goodness of your heart. Are you paying your aide privately? If so, when she is late, dock her pay; we have a 15 minute time frame - If she is due at 7:30, and arrives at 7:40, she 'clocks in' at 7:45; same if she leaves early. I used to do a 30 minute frame, but since she is being paid out of my son's trust, I feel I have to protect as much as I can. It's his 'life' money, and those 15 minute intervals add up over a month. Eating your food - maybe a meal allowance deducted from her paycheck?! Is there any reason she can't bring a sandwich from home?

    Tag is right about the guidelines aides should be working under; theirs is not to question a decision, but to do what is asked, when asked.

    It's so frustrating - and I've said this before - to hear all the horror stories about aides; I wish there was some way to improve that situation.

    But I also know that the good aides are reallly, really good, and worth their weight in gold!

    God bless

  7. #7
    Senior Member alan's Avatar
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    I've been lucky in the caregiver department (guess everything can't be bad, thank goodness.) My mother has beenm my primary caregiver for lo these 20 years, but we've had and have some great aides who are almost members of the family. One has been with us for almost the entire time, and he basically keeps the house, cars, and everything else running (but he can be a pain sometimes - he's always right, no matter what.) He's here in the afternoons weekdays, but also will come whenever there's an emergency - twice, he's come over and taken me to the emergency room at midnight.) Our evening aides are also good - one's a gem. Things could be a lot worse in this aspect of my life, and I apppreciate these people taking care of me as well as they do (yeah, I have the occasional thoughts like the original poster, but only occasionally.)

  8. #8
    Senior Member Joe B's Avatar
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    Thanks

    Just wanted to add a thank you to all the caregivers who are taking care of a loved one. It must be tough trying to have a life but having to devote time and caring to another because you care. Not only do you have your own pain but see the pain and frustration the person with the disability goes through and if you care, then that hurts even more.

    So thanks for doing what you do

    Joe B

  9. #9

    re thanks

    Hey, Joe B

    Thanks for the thanks! wasn't asking for it, but it's nice to hear! Someone told us early on in our son's rehab stay that the pain would be worse for us than him - at the time, we couldn't imagine how that could be - but, as time goes on, Matt continues to adjust his life - and it's us, the caregivers, who still feel the pain in our hearts.

    My husband said once he would give his left nut, if it would make Matt better!

    God bless!

  10. #10
    Senior Member Joe B's Avatar
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    Parenting and adjusting

    I was on a committee with parents of a boy with a disability. He had been using a wheelchair for several years and was in his early teens. Their son and they had adjusted to most of the issues associated with using a wheelchair etc.

    What the parents were finding difficult was letting their son deal with problems on his own.

    An example was the son had missed the ride he usually took home from school and was calling his dad to come get him. The father chose to tell him to go to the bus stop and tell the next bus he needed an accessible bus to pick him up. This was kind of a "tough love" approach to helping him become independent. I could see that this was as hard on the parents as it was on their son.

    There is a tendency to get institutionalized or to rely on our family too much. Some people naturally push to be independent as possible and others need a little nudge.

    I suppose its a matter of balance and maybe starting early is a good idea.

    Joe B

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