Photo from https://www.eldercare.net.au/

As you may have read in other posts, I’m both disabled and my father’s sole caregiver, which is even more challenging than it sounds.

His Needs

From his perspective, the needs in priority order are:

  • keep him company, especially playing guitar
  • make sure he has plenty of easy food available
  • he’s taken his meds (in his face, not just out of the pill-minder)
  • reminders to do stuff such as PT exercises or to call friends
  • housekeeping – dust, vacuum, disinfect, stock fridge & pantry, change bed linens, and send laundry down to the basement
  • make sure his dog goes out a few times
  • help him shower
  • help with his blog, book writing, photo cataloging, music recording, etc.

My Limitations

For the first couple of years, it was difficult for me to go up & down the stairs a lot, although the stairlift helped bunches. That said, how much more help I can provide when we’re both on the first floor remains to be seen. Why? Because I’m not supposed to:

  • lift stuff
  • bend over such as to pick up something from the floor
  • push things, such as using a vacuum cleaner
  • pick up, move, or carry “heavy” items

It’s also painful for me to sit in most chairs, which makes it challenging to keep him company.

Plus I’m an introvert whereas he’s a big-time extrovert; time with people energizes him and drains me.

Add to this that time spent keeping him company and taking care of his needs is time not spent getting things done for myself, the dogs, our finances, running errands, or taking care of tasks around & for the house. Or writing blog posts, for that matter 😁.

And because people time is draining and chairs are difficult, I’m too worn out and ouchy to get other stuff done after helping him. Similarly, doing his stuff after the day’s stuff is done isn’t going to work. Even if there was such a thing as having a clearly defined productive day, I’m too worn out from doing all that to turn around and do for him.

Put all this together and our house is awful at the moment. I’m the only one available to get things done, and we have way more to do than I can handle. Quite frankly, it’s more than I would’ve been able to handle at my peak. It’s been this way for so long that, well, many rooms are unusable because too many things are waiting, or worse, shuffled around a lot to make room to get other things done.

But Wait, There’s More

I physically qualify for in-home help, too, but can’t find anyone. If this assistance somehow miraculously appeared, there’s still a plethora of normal house-type things that aren’t the usually covered housekeeping tasks, such as:

  • organize; and I need to at least be involved because doing it without me = I don’t know where things are
  • run non-medical errands
  • minor sewing such as hemming pants or turning fun t-shirts into pillow cases or appliance covers
  • go thru boxes with me and be my strength, legs and/or height to do or move items
  • crappy crafting; the spirit is willing, but the hands (and spine & legs) are not

The semi-good news is that this kind of assistance is easier to find than in-home care. The bad news is that it’s all private pay, and rates have gone way up in the post-COVID world.

What I’ve Tried

Finding help was difficult pre-COVID. Nowadays it seems nigh impossible.

My MedicAid

Unfortunately, because it’s MedicAid, there are some strict payment restrictions. The person can only charge the State for the designated number of hours each month, will only be paid minimum wage, and cannot be paid for more hours or to supplement the rate.

Finding someone at $20/hour is hard. Finding someone at less than half that is unreasonable.

Oh, and back when I was approved, it was for a whopping 17.84 hours a month. Yep. Per month. Oh, yeah, they’re lining up now to take this on! 😆

In-Home Skilled Care

Dad physically qualifies for in-home assistance through MediCare. The first “but” is that many of the companies providing in-home care do it as part of skilled services such as nursing and therapy, meaning Home Health Aide (HHA) services are considered to be an expensive, low-reimbursement afterthought.

The HHA job is usually overworked and underpaid. As such, it’s hard to get an Aide at all, and if one is available, chances are the maximum amount of time is 30 minutes. That said, if they can get the shower done faster, they’re outta here. See, the office folks will say the HHA can do other tasks such as changing bed linens, cooking a meal, or vacuuming, but the HHA’s boss says shower-only.

The second “but” is that HHA services tied to skilled services have a short shelf-life. This is usually only available for two to six weeks at a time, and only after a hospital stay of more than three days. Thankfully it’s possible to go from the hospital into a skilled nursing facility, and then still get this care after returning home.

MediCare says his primary-care physician can approve this skilled coverage every thirty days and that over 1500 hours of assistance per year are available. The service provider companies, however, don’t seem to know this.

HHA-Only

The third “but” is that there are very few companies that provide HHA-only services in a way that MediCare covers. I’m not sure what’s going on with this, but knowing the government, chances are there are a lot of hoops to go through without sufficient payment to cover the administrative overhead to successfully go through them.

PACE

This Program of All-inclusive Care something or other is a wonderful thing. It’s basically like being in a skilled nursing facility at home. If he got approved, a bus would pick him up five or six days a week to go to a hospital or skilled care facility so he could frolic with the other old farts, see therapists, and get fed. Then the bus would bring him back home to enjoy time with his dog and big TV.

Well, that’s how it worked pre-COVID and hopefully will again soon. Last I heard they could resume this level of service from a pandemic perspective. But healthcare workers are leaving in droves for lower-stress, higher-paying jobs, or retiring altogether. So there’s no one to actually do the stuffs to provide the services.

Oh, and it requires MedicAid. Let’s just say that dad’s spend-down was inadequately documented (that’s another post … someday). Yes, his current finances qualify for MedicAid if he didn’t have something called Cash-Value Life Insurance. It’s basically an investment vehicle + life insurance policy. The State has a maximum cash value threshold. Ability to actually get at those funds doesn’t matter.

AAA

No, not the automobile insurance.

The Area Agency on Aging doesn’t require the spend-down documentation. Yay, one hurdle gone! Except … you guessed it, MedicAid is the clearinghouse, and the cash value thing still applies.

And here’s the fun part. He has to qualify for the program to get on the waiting list. Once on the list, it’ll be at least a year, maybe two, before someone can actually get in here to help out.

Hospice

There’s hospice services to help folks whose life expectancy is six months or less. Say it with me this time, the cash value thing still applies. Cuz. MedicAid is the payer for this, too.

Private Pay

Oh, wait. As in, this is me trying to find people. Even if we could find people, there’s that whole paying thing. I mean, if we could afford private pay for everything we need help with, neither of us would be on MedicAid.

MediCare

There’s a rumor that some MediCare plans theoretically include HHA-only services. Apparently those are mostly the privatized insurers, meaning you don’t actually get the promised coverage. His deprecated semi-privatized Part J supplemental plan includes this, but only in certain states.

We don’t live in one of those states.

To be clear, Part J is utterly amazing, which is probably why it’s not available anymore. For example, MediCare pays for 20 days in a skilled nursing facility. The J thing pays for an additional 80 days. Granted this is per year, and dad’s already been in the facility for almost sixty days. Hopefully he won’t need to go back into a facility.

The Application Process

And the mostest funnest thing about trying all of these is that they each require their own intake process. I spend at least 100 hours (not an exaggeration) applying for each program . This includes finding the service, making the initial call, doing the pre-qualification assessment, setting up the on-site interviews and inspections (usually at least two or three), being fully available throughout said visits, providing the requested information the way they need to see it, and so much more that it’s been forgotten.

And let’s face it. If I had that kind of time, I wouldn’t need help. If I could spend this much time just sitting around on the phone or filling in electronic forms, I could go back to work. Put these two together, and my ability to get things done in a timely manner is almost nil. Just for grins, slow response time is seen as this being a low priority rather than proof of need.

Insurance Provider Process

Thank goodness trying to get help directly through insurers didn’t take anywhere near 100 hours. Well, maybe it came close for all potential carriers combined, what with researching to find out this coverage might actually exist, finding the carriers that may provide it, comparing their plans, checking their reliability of providing promised coverages, and learning about the privatization mess.

Checking with his Plan J carrier took longer than it should’ve, too. Yes, this carrier and service were listed on some we-know-all-about-this-kinda-thing site. But no, the carrier didn’t seem to know about it. And for reals, if they didn’t even know they provide this benefit, how likely is it to work out after setting it up, ya know?

Oh, and yes, they do provide these services. Just not here. I said that, right? Only a couple times maybe?

Research Help, aka Ma Bestie

Why, yes, I was able to get some assistance with the research and followup and applying and blah blah blah stuff.

This was no easy feat for a couple reasons. First, she’s also disabled and has too much of her own stuff to deal with. And second, those she could talk to are used to dealing with family members. I tried to provide sufficient information in a way that made sense without yammering on about irrelevant details.

Short version: after reading this post, how well do ya think I did? 💩