In-home care

[PepperJack]

I cannot believe Medicare doesn't cover in-home care for ALS patients. We have just begun research for what it will cost us out of pocket. Is $20/hr through an agency reasonable?

 

[affected]

Are you a PALS or CALS?
Your profile says PALS but in another thread you refer to your husband as though he is the PALS?

Maybe a short introduction would help so we can get to know you?

 

[Lkaibel]

Hello,

Yes it is a difficult situation. If you are looking for homecare through an agency, it is going to be more than $20.00 an hour. I suggest comparison shopping agencies in your area.

 

[notBrad]

Here in Oregon the pay is $14 per hour for the aid so $20 per hour to an agency doesn't sound that far off. That said, we've had excellent results using church volunteers and friends to run errands for Vicky and help around the house so she is able to devote time to me.

We've also had good luck with finding people who have a great personality and training them. After all, taking care of me is not rocket surgery and we'd rather have someone who meshes well with us and train them to do things like we want them done. Nothing is more frustrating than having the "i don't care how you did it at the last place this is how 'I' want it done" conversation over and over again.

We were fortunate enough to find a nice young man named Ethan who is a quick study and also is big enough (6'3" 280) to move me around when the need arises without endangering me or him. We also had the physical therapist show him all the ROM stretches so I get stretches five days a week.

We also found a woman who had just got her number ( registered to work ) but had no experience. She worked for a reduced rate, and did an excellent job for us because we were the only reference on her resume.

We've also used people on ssdi to do things., they are allowed to make a certain amount in addition to their payments.

There are alternatives to hiring an agency. You just have to look around and be open to suggestions.

 

[Narrowminded]

I think price can also be determined by what part of the country you live in. My husband is trached and vented, so we cannot use an aide, we have to use a licensed nurse when going through an agency. Here that means 35/hr. I believe the aide can be had for 25/hr if you don't have anything that requires a "skilled" nurse. As notBrad says you can always hire on your own. Hope that helps.

Hugs,

sue

 

[PepperJack]

Affected, you are right, I probably need to specify in the profile but the account was created for both me and my husband so when you see a question or a reply, it could be from either of us. You are all so helpful. My husband is at the point where he needs assistance with showering, brushing teethe, etc. I work full-time. This has just been so devastating to our family.

 

[KimT]

PJ,

$20 an hour for an agency is about right. I'm going to try to go the route of hiring outside an agency. I found a lady through a mutual friend who works for me on Tuesdays. She does errands and cooks, washes my bedding. She only charges $12. She is worth way more than that and is dependable. When the time comes for me to have more care I'll probably use an agency and out-of-agency people.

 

[lgelb]

PJ, I'd suggest you and your DH have separate accounts, to avoid confusion as the conversations go to and fro. For example, we have separate subforums for CALS and PALS so they can speak with their peers.

 

[affected]

Hey pepperjack - were you or your husband diagnosed July 2016 or 2017 as your profile says? I just read somewhere else 2016.

It's really quite confusing - PALS often have a lot of issues using technology as they are paralysed and CALS are so stressed, so trying to figure when a single user is talking as PALS or CALS and anything about them is going to totally do our heads in!

As Laurie suggests (and others have done this) you should have a separate account each and log in and post as different people. I'm sure it will even be easier for you both as you can keep track of what you wrote individually

 

[frankb]

agencies charge what the market will bear. an agency registered with our local als chapter offered $17.50 per hr but proved unreliable in getting out of the starting gate. have paid $19.50 and $21.50 but most charge more if bathing is required. have considered a private caregiver but two of my friends had horrible results (as in big time theft). i use my agency now at four hours per day, seven days per week. full time would cost a buck or so less per hr but four hours per day is adequate for present. good luck and happy interviewing. - - - the more agencies yo interview, the more informed you will become ! !

 

[lgelb]

Basics: if you are hiring someone with a credential of some sort, like a CNA or NAC, verify it and any sanctions on your state's online database [free]. Google everyone and almost invariably if they have a criminal record of any significance, it will come up, but you can also pay to search specific databases. Finally, trust your own instincts while interviewing. We have all walked the other way to avoid someone on a dark street. Your brain is geared to protect you. Once you have someone good, ask them for referrals/passing the word if you need more people.

Of course, campus job databases are always a good place to start and are often free, as well as your own networks from friends, family, work, community, church, library, senior center, etc.

 

[Atsugi]

Ask very pointed and blunt questions. None of our nurses had dealt with paralyzed people before, and one spent an entire career in admin. I honestly think she was afraid of the patient.

 

[Jrzygrl]

Took us a couple of times, but we have found an aide that we like. She does work through an agency. She had not previously worked with anyone with ALS but is more than willing to learn what we need. She has proven to be competent and dependable - both of which are crucial. Talk to different agencies and do not be afraid to speak up about what you need and if the person they send is doing what you want. Good luck in your search.

 

[PepperJack]

Thank you all for the advice.

 

[ntd19]

The local ALS Association had a list of agencies when I started needing in home help for my wife. The rate here in St. L is $20 to $25 per hour. We have had some excellent help.