OP here, thank you all for your thoughts, advice.

I think we'd be fine with aides, it's really the feeding tube that complicates everything.

Because of licensing, it seems like the aides won't do it, or won't participate enough to take responsibility for doing it.

A private person we hired off the internet with no medical licensure, though, seems like they can do it. I can do it. My mom can do it.

I'll look into that company for more complicated care at home situations, thank you.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The aides? He has a feeding tube.

I see. I think your best bet is to connect with people in the medical field, share the situation, and be clear you’ll pay well, whatever it takes. Years ago, I knew a family with a live-in LPN M-F, and another weekend LPN. So if the average pay is 30-35/hr., you need to be clear upfront you’ll pay 40/hr. For the right price, you can get almost anything. You want top-notch continuity of care.

That’s $350k a year.

Based on personal experience, that’s the ballpark. It could be considerably higher in the end. Overtime, scheduling problems, raises to retain good people, etc etc.

What state do you live in?

I don't think you need an RN 24-7 just to give your dad tube feedings, though.

You need an RN to supervise the feedings, train the home health aides, and be on call for any issues that crop up. A home health aide willing to do tube feedings might cost more than one who isn't willing though. The RN can do weekly medication set up. a home health aide cannot administer the medication, but could with medication tech certification if allowed in your state. If your mom could supervise the actual ingestion of the medication each day, that would be easiest.

You don't need an RN to supervise tube feedings at night, so whoever lives in the home doesn't have to be an RN anyhow.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The aides? He has a feeding tube.

I see. I think your best bet is to connect with people in the medical field, share the situation, and be clear you’ll pay well, whatever it takes. Years ago, I knew a family with a live-in LPN M-F, and another weekend LPN. So if the average pay is 30-35/hr., you need to be clear upfront you’ll pay 40/hr. For the right price, you can get almost anything. You want top-notch continuity of care.

That’s $350k a year.

Or if you find an older person who would rather not have to pay their separate mortgage/rent, you can negotiate. Anything is possible.

More from Bayada - I am familiar with them from the ALS association.

Adult Nursing care services are provided by registered nurses and licensed practical nurses who are highly experienced and knowledgeable professionals who specialize in home health care. BAYADA Nurses help people with ALS with their needs broadly ranging from management of ALS to tracheostomy and ventilator care. BAYADA is currently working to develop a specialized training program for nurses about the unique needs of our people with ALS. It is expected to be available for our nurses in 2015.

Care is typically provided in shifts (two hours or more) on an on-going basis. BAYADA Nurses are available 24 hours a day, 7 days a week. Services include:

Management of a tracheostomy, using a ventilator as well as suctioning care
Nutrition via a feeding tube
Assistance with communication devices such as a symbol and picture board or iPads
Development of bowel programs
Assistance with mobility while managing energy reserves
Administration of medications and treatments, including IV

It's going to be expensive care, but it seems like they should be able to help you.

Anonymous wrote:Here are our needs: He needs someone to manage his medications and feeding g-tube tube (aides will not want to do this).

He needs someone to adjust his bed, get his TV remote, clean up his diaper/urinal, help him sit up, help him try to walk if he wants (the rehab place claimed he was walking, I have yet to see it). I believe in reality he is likely to be largely or entirely bed bound. He will need help bathing/sponge baths. He will need help to ensure he does not get bed sores.

He is mentally competent and with it and is a generally pleasant person.

OP, most of these are not difficult things to care for at all.

Diaper/urinal changes are unpleasant but home health aides can handle that.

It's just the feeding tube and medications that are causing the problem. If you mom can't help with those, then it's going to be hard.

I would consider contacting an agency that specialized in ALS and MS and Parkinson's patients . people with really difficult care needs.

https://www.bayada.com/homehealthcare/services/adult-and-private-duty-nursing.asp

Anonymous wrote:

Anonymous wrote:The aides? He has a feeding tube.

I see. I think your best bet is to connect with people in the medical field, share the situation, and be clear you’ll pay well, whatever it takes. Years ago, I knew a family with a live-in LPN M-F, and another weekend LPN. So if the average pay is 30-35/hr., you need to be clear upfront you’ll pay 40/hr. For the right price, you can get almost anything. You want top-notch continuity of care.

That’s $350k a year.

I agree referrals and word of mouth are w best ways. The other methods are ok stepping stones. How we found our good caregivers was posting ads and then one thing led to another until we found what we were looking for.

You definitely need CNAs.

Not sure if this is possible but could you arrange skilled nursing through Medicare and then unskilled for the rest of the care? I have a family member with a catheter and Medicare covers skilled nursing through an agency of my choice. Then cheaper unskilled can do the rest and you can find them on NextDoor.

The challenge is the feeding tube I assume needs to be administered at frequent intervals so not sure how that would work but you could call agencies and see what they say.

I’m really sorry, OP.

My dad had ALS and it was nigh impossible to find reliable caregiving. We would have paid anything but the issue then was the candidates on the higher end seemed like crooks.

We wound up most helped by a decent older retired gentleman who would come by and bathe him, but he showed up any time during the day and took weeks off at a time.

8:20 here.

It may be better in the city but in rural Maryland I found it virtually impossible to pay private to get an RN or Doctor to the house. I really wanted a podiatrist for nail care but no one would come to the house.

The excuse I was told was due to "insurance."

I'm not sure about the feeding tube care but I think a couple of my caregivers (CNA's) have done feeding tube care in the past with past clients.

We use CNA's. My Dad preferred not to have the CNA's. He liked the unskilled housekeeping aids but the CNA's are far superior on the job.

I'm paying between $25 and $31 per hour. The two people at $31 have been with us 10 years. I'm starting at $25. This is the eastern shore of Maryland.
We pay legal so workers get social security, workers comp etc. We give large Christmas bonuses.

Our best have been direct hires and referrals. I have one person who has referred 4 others over the years.
The direct hires (people we already knew around town and the referrals have been our best workers.)

I found Care.com to be pretty useless. I never was able to get anyone to come out for an interview. I've also used Indeed. We got probably 300 resumes from Indeed. We talked to probably 25 from Indeed. We hired one from Indeed. The problem with the Indeed applicants is that most did not want to work over 18-20 hours and we needed folks who could pull 34-36 hours. The Indeed applicants also had a lot of restrictions, i.e. could only work this day etc. Be aware that Indeed is costly and makes it difficult to cancel the advertisement.

I have accounts with 3 agencies and supplement with them during tougher times. I try not to use agencies. I've had too many times when they have called me day of and did not have any workers.

I run 6-8 people to cover 24x7 hours/days of care a week.

I found it is better to have more people working fewer hours. If you have too few people working say 44-50 hours per week no one will cover extra hours when someone is out.

Anonymous wrote:I mean this with all kindness, but you are staving off the inevitable- that your father really needs to be in a skilled nursing facility. I think you would be better served to find a facility and then supplement their care with aides. That way your father has dedicated support from a 24/7 facility and a dedicated aide to provide individual care.

+1

I just went through this with my mom and decided a SNF was safer, due to staffing concerns. Unless money is no object and you can truly afford to operate and fully staff a 1-person nursing home, with a care manager, PT/OT, on-call doctor, and a team of nurses? Presumably housekeeping is already taken care of, and your mom can handle trips to the pharmacy, but at some point she might not be able to help and when it happens, it might be fast. Also, good SNFs are out there but they might not have a bed available right when you need it if he declines suddenly or further and your mom can't help him anymore. So that's a risk.