why is it so hard to find a caretaker

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cukita99

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Jun 12, 2007
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362
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PALS
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US
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tx
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el paso
my caretaker left to have surgery. it is hard to find trained caretaker on a budget. i get so frustrated when i dont get sited right on my wheelchair and i cant speak. the bath is the hardest to explain when you cant talk. how do i control myself from getting agitated. i dont want to complain and be ungrateful but i need to be comfortable. i hate that my family dont bother to check on me. my son has been doing as much as he can. he cant get a job cus he has to help the new caretaker and i feel bad i cant pay him. he takes care of me weekends. he should be out enjoying his life finding a girlfriend.
 
Isn't always the way, when something should be so simple it turns out not to be as simple, I feel for you & understand your frustration, my dad had a severe stroke when he was 58 years old and was completely dependent on caregivers ( as he was fully paralyzed ), he only ever liked two of the many who bathed him and cared for him and to him they were like gold!

I hope your issue is resolved soon, perhaps when your regular care giver comes back you could somehow get her to find a special backup <<<<<<<< hugs>>>>>>>>>>>>>>>>
 
I can definitely relate to what you are experiencing. I wish I had a solution for you. I even made up lists of how I wanted things done and posted them on the wall. One caregiver does his best and tries really hard to make sure I am comfortable etc. The other caregiver can't seem to do anything right, it would not matter if I could talk she still would not obey my requests.

Here is a link to what I did. Procedures

I hope you can get it resolved.
 
We can totally relate to the care giver problem. Have not done a tally recently but we have probably easily interviewed 30 people over 12 months and half the allocated hours available to us a week are unfilled. We have our own collection of classic comments and I am sure you have your own. Some of my favourites are:

After being asked to wash my husbands neck as his head leans to the side and it gets sweaty: "Oh do you want me to dry it too!". Or a different carer "Oh do you want me to do BOTH sides?. Then we have to keep the shaving up especially because of the bipap masks and we use an electric razor. One asked "Do I use shave foam with the razor" the other with supposed many years of experience looked at it like alien technology and said I wouldn't know how to use that on ANOTHER person. Well, should I let a person who can't use an electric razor be in charge of non-invasive ventilation? However, my no 1 favourite comment was when my husband asked if he could have a drink of water. Answer: "Where do I get that?' So basically I do most of everything. Most worrying was though when I went down to the supermarket one afternoon and the carer knocked out the power lead to the bipap but did not realise this at the time. She only knew that the power off alarm was sounding. My husband cannot breathe lying down without the bipap. Well she jumped into action and switched on the back up bipap machine. Well that would have been helpful if she had connected the hose to the mask! There it was pumping away independently from helping him. He is shaking his head and she is saying oh don't you want the machine on? Finally she realised that the plug was out and finally he had air again. Then there was the carer last week, another reject, who just could not put the mask on his face (after two four hour shifts, the last of which we were continuously taking it off and putting it on because of sputum problems and it was a case of "I cant get it you do it"). She was saying well if he was sitting differently and his head wasn't so low and he wasn't having sputum problems and he didn't need to eat it would be better. Well sorry, but that is the way it is and I can't pick days for you to work when you won't have to do anything. Then there has been the parade of carers who are determined that the quattro mask, the easiest one to put on that we have, should really go on upside down and cannot be convinced otherwise!

The light in the end of the tunnel though is last week a carer started who will be doing 8 hours per week and she so far is just great. I would trade 8 hours with her for 20 with the others.

Sorry to go on and on but it is a real sore point with me,

Thanks

Chris
 
oh HOW I AGREE. No-one in the whome wide world answered my prayers
 
nice to hear im not bing picky n im not alone. it was a circus putting me to bed last night n my son wasnt home.
 
No you're not being picky and it is sad that so many of us are in the same boat. Most of the time it is common sense that is lacking. I hope that you are able to source a competant caretaker soon,

Take care

Chris
 
well my family dont bother to visit or read about ALS but they think i exaggerate. only my son understands me cus he deals with me everyday. he gets mad when i dont stand up to people says im to nice.
 
For those of you in the US, are you paying for the caregivers or are you receiving help from Medicare, Private Insurance or VA? We have all three - Medicare, Private Insurance and VA. I feel like we should be able to get some help with the costs.
 
missy, i have nothing im paying out of my savings and they are running out fast. everything seems to be breaking too, my stove, washer, and vacuum, help doesnt care, they dont take care of my things.
 
I think that is TERRIBLE ! that with all you are dealing with that you have to also worry about appliances breaking and dwindling savings ! I hope you favourite caregiver comes back soon and I am thinking of you << hugs>>>
 
We have only private insurance, which will not pay for caregiving. Phil and my friends are doing everything for now. He will (we hope!) continue working and pay privately out of pocket if I need someone with me all of the time.

Cukita, I really feel for you. Missy, too. I thought the VA did provide caregiving, but must be mistaken.
 
money, money, money, it all comes to money. my caretaker will only come back if i pay her wht she wants. m son doesnt want to help me weekends any more. he said he hates me n i ruined his life.
 
money, money, money, it all comes to money. my caretaker will only come back if i pay her wht she wants. m son doesnt want to help me weekends any more. he said he hates me n i ruined his life.

I so feel for you cukita99 I ask myself "WHY" why do family friends etc turn on people at the VERY time they are needed the most, is it selfishness, denial, the lack of ability to have compassion for the less fortunate? we have 4 children and none of them really "GET IT" e.g. 2 of our sons barely mention their dads illness the other 2 constantly firght with me & barely acknowledge what I am coping with however they acknowledge how sick there dad is, so I get beaten up for it ! makes no sense whatsoever!

MOney money money how right you are! money is what get's you the golden ticket so to speak, with money is power with money you can buy time with money you can basically buy anything HOWEVER it cannot buy real love and that is what makes my heart break for you the most because your son should be stepping up tp the plate, putting HIS emotions aside and putting you FIRST.

YOU HAVE RUINED NO ONE'S LIFE, YOU DID NOT ASK FOR THIS DISEASE, just know I am sending you my love and prayers and that I really care even though I am a complete stranger because to me you are a hero <<<<hugs>>>>>
 
thnks , the only sister that is caring is in vegas out of five tht live close by. she gets on im n chats everyday... she offer to pay for one weekend a month so my son can go out.
 
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