Outside help/paid care aid

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Jun 21, 2014
Wondering how many pals have outside help. Ie a paid caregiver. What do they help with and how offen do they come help?
I have someone. she comes 6 days a week, two hours a day. she gets me out of bed, showered, dressed and fed. meds, coffee, whatever she can fit into 2 hours.
We have someone, too. Our aide is through an agency, and it was a humongous relief when we first got her. Trepidation about a stranger coming into the house is normal and they are used to that. Most aides are in this line of work because they are naturally caring, big-hearted people—if you have reluctance, I think ultimately you will be happily surprised. And if you do not like your aide for any reason, you can always just call the agency and tell them you would like to try someone else. It happens. No biggie. They will accommodate you.

At the lowest level of unskilled care, the aide comes in and sits with a person, does light housekeeping, and will prepare an easy meal (make a sandwich or reheat leftovers). She has received training with a Hoyer lift, but it's unclear how much she has actually used one. She cannot give medication, even a vitamin, or use my husband's feeding tube, by law. Our local ALS Association partners with a few for-profit agencies, and we are looking into switching (their aides receive specific ALS training from the ALSA and may be better suited to complex, long-term care). Our aide now has been with us for several years and has become like a close friend, which has its ups and downs. She is used to the routine and as my husband has experienced changes, she has not kept up with his needs.

An LPN will be able to use the feeding tube, and an RN to give medication, or at least that's the way it works with agencies in PA, where we live. Skilled care is much more expensive ($35-$50 per hour), which is just not in the cards for us. My FIL comes in most days to help and I have started going back to school, just to get out of the house a little and have my own independent thing going on (a very important thing both for PALS and CALS). But my FIL is not in the best of health, so we are going to hire privately, either through care(dot)com—which I've heard excellent things about—or through a job listing at the local library or nursing school.

I have heard that if you hire privately, it is important to get something called "umbrella" insurance on your homeowner's. This will cover in the case of a lawsuit, if someone is hurt by slipping on ice if you can't get out to clean it, etc. I don't know if it would cover injury in the line of care-taking.
I have a home care nurse that comes to give mum a break for 4 hours a f/n or when we request it , they do meds, hygiene , light house keeping etc to help her out. It's good if they can send the same few nurses (if Possible ) to get to know your routine before communicating becomes harder. It can be nicer and easier that way
I think there are at least 3 levels here, with their own outside person type requirements.

First is needing daily help for certain ADLs but independent otherwise.
Second is needing ongoing help, e.g. at the quad stage, but it's not dangerous for the person not to be monitored for certain periods.
Third is needing ongoing monitoring, e.g. needing BiPAP 24/7, at risk for aspiration, etc.

So if you are still in the first stage, the 2h daily thing may work.
We just got a nurse to be 2 hours a day every day. She seems to be not familiar with the disease, but I´m not surprised. Basically she´ll be here so I can go out a bit (I´m the main caregiver). It seems to me that 2 hours is not a lot of time, considering that the rest of the day I´m constantly asked to do things (Feeding, adjusting position, suction, etc.), but at this point I´ll take any help I can get.
Thanks for sharing. I am going to hire a private care aid 3days a week 4 hrs a day to help shower and do my hair. Im nervous but excited to have the help and someone to do things with. Ie. Play games, go shopping.
That's great! once I got over the loss of (dignity? pride? self-reliance?) being able to do everything for myself I found that my mornings are just so much easier on me. No more struggling to get out of bed or shower or get dressed. It almost makes me giddy sometimes to have that help after not having and needing it. My days seem longer and less stressful now. I hope your experience is similar.
Can any level of these aides drive you places? I am still driving but not sure how much longer and do not want to give up all my outside activities. Wendy
Wendy, if you want a driver, include that in your posting. Make sure there is insurance for an additional driver for your car, or that the aide is adequately insured if it's her car, and you as well.

Just to clarify what Yutopia said, if you use an agency, the levels of care about aides not handling meds, etc. (depends on the state) come into play. If you hire privately, you agree between the 2 of you what the duties will be, "within the scope of the license" or not.

Hope this help improves things for you, Trixie!
Thanks, Laurie!
Private duty is the way to go.
Hired a lady privatly way better than the public health care. She just watched this week but seemed very helpful and nice. She even gave my arms a massage. She makes me breakfast cleans my room and bathroom, way more than public health would do. Glad i finally found someone. And she told me about a govt program that will subsidise her wages. A program i was never told about by anyone. Thanks for all your replies.
Wow Trixie I'm doing my happy dance for you!
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