This is the OP here thank you for all your replies. Our home care nursing agency has found nursing staffing for all of the weekdays 8 am to 8 pm. We still don't have nights or weekends. But my other parent *can* do some care, and I have another relative within 45 minutes away.

Home care may not be doable for the long term but for the moment at least it is buying us some time so we can consider our options. Even if it is expensive and hard to organize, it is what my parent vastly prefers so I am going to give it a go. Of course if their conditions worsens or the staffing is too tenuous we'll re-evaluate. Thanks for all of your advice...

Anonymous wrote:

Anonymous wrote:I’m in the “crisis” phase of arranging in home care for parents who have lived in denial for years. Dad is now severely debilitated; mom more capable but *cannot* care for him at the level he needs. They are significantly lucky in that they/we have assets/money.

I live far away and my main goal is to get something stable in place. What is the most reliable way to get consistent care in the home?

There are agencies, but one aide company has so far failed to find us a live-in aide, I think because my dad needs more care than they really want to deal with. I called a private nursing place, but they are cobbling together shifts of various people and it seems like, for the long term, this may not be the best, plus what if the nurse fails to show?

Are there live-in LP nurses? Or any home services that, if someone can’t come, they send a replacement? I know we are lucky to have money to have this be an option, but so far care at home seems very difficult to arrange even if they money is there. I want to respect my parents’ desire for at home care but is this even feasible? How do people arrange it?

I always thought that home care was the best, most logical option.

Once my father started to decline, it became obvious that an assisted living facility was the only practical option for non-wealthy people with some money and no in-town close relatives without full-time jobs.

If one relative has no work outside the home or can quit work and manage the home care, keeping parents at home can work.

But you need an adult with a lot of free time or a butler, housekeeper or care manager to oversee the care if a relative can’t do that.

So, the actual cost of home care for a family without a spare relative to manage the care is much higher than the ALF cost.

And, as annoying as an ALF might be, it’s much better equipped to handle problems than relatives without nursing experience will be.

I slept in my father’s ALF room for a week when he was dying, and the ALF people were simply much better at feeding my father, bathing him, dressing him, etc. than I would have been. I know that many people manage home care for relatives, but there are also a lot of people who run marathons. A lot of us are not natural fits for doing things like that.

I just wanted to add to this since we had the situation of being able to afford all the incase and I, one of the adult children, lived close enough to be a contact realtive. Residential is still better. The case managers claim it is seamless, it is not.

It's not that you hire someone to live there all the time and clean and cook and do all the jobs. Think about it and spend a few hours doing what you expect the person to do day and night. It would be abuse of labor. They have shifts and despite what they tell you people no show. The person on the previous shift is not supposed to leave until the one on the next shift shows, but that is unrealistic because people have other jobs, kids, their own ill loved ones, medical appointments.

Stuff goes missing so don't have valuables around. Sadly it's not the distant caregiver who is the one doing the stealing. In our case it was a beloved caregiver who our parent just adored. Heartbreaking.

If the person has say a year to live and you have a willing adult child in the area willing to keep an eye on things that is one thing. This can go on for years and years and that adult child can have her own illnesses, her own life stressors/family stressors and in our case it went from the other siblings being appropriate and appreciative to taking advantage and treating me far worse than hired help and i did for free of course. I think it would be rude and assuming to expect random relatives to oversee anything. You are much better off being grateful for any visits from cousins/nephews/nieces because it makes them happy and provides social stimulation. Do not ask them to do x,y, weekly, simply thank them when they do visit even if it's once a year. Life is far more stressful than it was in the olden days and people have are living longer in worse shape and too often it comes with behavioral issues that scare people off. I can tell you as the adult child I burned out when enough other stressors hit my life and the parent grew basically abusive-I'll call a spade a spade and siblings were entitled. I made a big mistake. It would have been better off for everyone to find a fancy residential living situation and simply visiting to check on things and leaving at the first sign of bad behavior. One of my siblings tried to take advantage of the kindness of relatives and that backfired big time.

^^also if your parent is on feeding tubes you will most likely have to look into nursing homes. Paying 300k a year for home care does not mean superior care.

Anonymous wrote:

Anonymous wrote:Agency. You need shifts. A live in aide is not a 24-7 on call person and will also be sick/absent sometimes. An agency is the most reliable option. Imo there’s not really any point to a live in aide unless you’re hoping to exploit them somehow.

When the agency sends some one good, who you really like, you can try to poach them to hire them directly. You need to take care because this may/will blow up your relationship with the agency.

For 24/7 care we’ve averaged around 6-8 people including a few really anchor people who work a ton of hours. This is mostly nursing aides but also someone who can drive/shop/cook. It costs north of $300k/year.

I also want to say that even when you get periods of stability, this is a not insignificant admin lift. Someone is always sick/quitting/on vacation. Even with payroll services, the payroll stuff still takes time/attention. To say nothing of insurance paperwork, etc.

Even just making sure all the disposable supplies are stocked is time and effort.

The reality of doing this is that you’re turning your home into a nursing home with one resident. It’s like having a restaurant with one guest. It’s easier than a full restaurant, but it still needs all the things a restaurant has. Can you manage this from out of state? It’s going to be really hard. That’s the reality.

This. You are running a nursing home out of the house. It is a full time job just to stay on top of all the things to do. Very stressful. I told my parent I was not overseeing and running a nursing home out of the house. They live in an advanced care assisted living now and are happy and doing well. I also lived out of state.

OP, any updates?

Anonymous wrote:I’m in the “crisis” phase of arranging in home care for parents who have lived in denial for years. Dad is now severely debilitated; mom more capable but *cannot* care for him at the level he needs. They are significantly lucky in that they/we have assets/money.

I live far away and my main goal is to get something stable in place. What is the most reliable way to get consistent care in the home?

There are agencies, but one aide company has so far failed to find us a live-in aide, I think because my dad needs more care than they really want to deal with. I called a private nursing place, but they are cobbling together shifts of various people and it seems like, for the long term, this may not be the best, plus what if the nurse fails to show?

Are there live-in LP nurses? Or any home services that, if someone can’t come, they send a replacement? I know we are lucky to have money to have this be an option, but so far care at home seems very difficult to arrange even if they money is there. I want to respect my parents’ desire for at home care but is this even feasible? How do people arrange it?

Hire a LPN and offer $40 hourly with guarantee hours and benefits. As backup, I’d get Visiting angels(they charge $32 minimum of 4 hours) they have reliable nurse aids.

Anonymous wrote:

Anonymous wrote:It should be possible to hire a local consultant who deals with assessing and arranging care for seniors. That person would hire and coordinate care for your parents. Sounds like it would be worth it for you to go that route since your parents can afford it and your dad's case is complicated.

From this post you can be assured this person has never tried to find this.

We had one for my mother and then 10 years later for my father. It's called a CARE MANAGER. They even have an association. The manage the care and build a staff of up to 10 aides/nurses that can rotate through the house. Hourly rate is at least $60 and this is on top of the cost of the aides/nurses.

Anonymous wrote:What does Medicare provide? My father, who does not have a feeding tube, was provided a hospital bed, wheelchair, pt, ot and person to bathe him at home. When Medicare stopped paying for bathing and pt, we simply offered to pay it ourselves. They’ve been wonderful. The bathing is $30 2x week.

In addition, my dad has a woman who cooks, cleans, does laundry and takes care of him ft. But we hired her when he was much healthier and have slowly increased her hours and responsibilities. She’s an older widow.

That's a very low price. Is this in another part of the country with a much lower cost of living?

Have you checked out synergy in Rockville

20:59 here

If Medicare can provide at home help with the feeding tube, you may be able to piece together the rest. But it will be hard to do this without the Medicare piece.

Some other ideas:
- Have you contacted any local nursing schools or CNA schools? They may have students who will do this.

I wonder if there are any foreign nurses that can help? My aunt (now deceased) was an RN in our home country but never bothered getting her license in the US. When she became a widow, she worked a few years for a wealthy elderly woman. I wonder if there’s a way to connect with them? (My aunt was hired via word of mouth.)

What does Medicare provide? My father, who does not have a feeding tube, was provided a hospital bed, wheelchair, pt, ot and person to bathe him at home. When Medicare stopped paying for bathing and pt, we simply offered to pay it ourselves. They’ve been wonderful. The bathing is $30 2x week.

In addition, my dad has a woman who cooks, cleans, does laundry and takes care of him ft. But we hired her when he was much healthier and have slowly increased her hours and responsibilities. She’s an older widow.

my MIL set this up for one of her neighbors with people she knew from church. they only had 3 caregivers. they did it for several years.

is the feeding tube something a person can take care of on their own with a nursing background?

but it does sound like he may need a nursing home.

Anonymous wrote:I’m in the “crisis” phase of arranging in home care for parents who have lived in denial for years. Dad is now severely debilitated; mom more capable but *cannot* care for him at the level he needs. They are significantly lucky in that they/we have assets/money.

I live far away and my main goal is to get something stable in place. What is the most reliable way to get consistent care in the home?

There are agencies, but one aide company has so far failed to find us a live-in aide, I think because my dad needs more care than they really want to deal with. I called a private nursing place, but they are cobbling together shifts of various people and it seems like, for the long term, this may not be the best, plus what if the nurse fails to show?

Are there live-in LP nurses? Or any home services that, if someone can’t come, they send a replacement? I know we are lucky to have money to have this be an option, but so far care at home seems very difficult to arrange even if they money is there. I want to respect my parents’ desire for at home care but is this even feasible? How do people arrange it?

I always thought that home care was the best, most logical option.

Once my father started to decline, it became obvious that an assisted living facility was the only practical option for non-wealthy people with some money and no in-town close relatives without full-time jobs.

If one relative has no work outside the home or can quit work and manage the home care, keeping parents at home can work.

But you need an adult with a lot of free time or a butler, housekeeper or care manager to oversee the care if a relative can’t do that.

So, the actual cost of home care for a family without a spare relative to manage the care is much higher than the ALF cost.

And, as annoying as an ALF might be, it’s much better equipped to handle problems than relatives without nursing experience will be.

I slept in my father’s ALF room for a week when he was dying, and the ALF people were simply much better at feeding my father, bathing him, dressing him, etc. than I would have been. I know that many people manage home care for relatives, but there are also a lot of people who run marathons. A lot of us are not natural fits for doing things like that.

The agencies charge you a lot but generally pay minimum wage.

Anonymous wrote:

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.

Yeah, I think with RN supervision (available by phone) and training, you can find home health aides capable of handling the tube feedings. It's just a matter of finding them. I do think Bayada should be able to help you although they may be experiencing staffing shortages like everyone else.