I don’t have a lot of time right at this moment, so I’m going to paste an update from my Facebook page. It focuses on my dad, but this site will be dedicated to my dad (David Maness), my mom (Sandy Maness), and my brother (Greg Maness). Right now, I’ve been updating loved ones by adding comments to that post, but I thought setting up this site might be a better idea as things go forward. Thanks for checking in—I’ll try to update the site often enough to make it worth a return visit!
I went off Facebook briefly this week. I didn't leave for any big reason. I'm back because I need to yell my current story into the wind and see if it makes its way to wherever help lives.
Folks who know me know that I've been doing some caregiving work with my family for quite a while now--maybe about 8 years in some capacity. First it was mostly with my brother, then my mom, and then my dad and, really, the family as a whole. It's been possible for months, in large part because my dad has been strong enough to keep people OK while I'm at work.
This week, the entire landscape of family caregiving changed when my dad got rotator cuff surgery.
The surgery itself was as successful as it could be with a cuff that was more damaged than previously thought, and one that belongs to a 73-year old man who's used that shoulder for decades to compensate for a left side that MS has rendered almost useless. We will have to wait and see whether the shoulder will heal, or if more work will need to be done in the future.
But, even if everything goes perfectly with the healing process, Dad will not have the use of his right arm for months. Without it, he is completely dependent on others for everything--he can't move himself or manipulate objects in his environment. He can almost manage to feed himself from a plate or bowl until the last few bites that simply slide around in front of his fork or spoon. But that's been the peak of independence.
It would be difficult if all I had to do were take care of my dad 24/7 because neither of us would sleep, and I'd have limited gaps of time in between helping with his physical needs to do things like clean the house, do laundry, sleep, etc.
But I also have a mom with dementia (seemingly Alzheimer's) and a brother with Lennox-Gastau syndrome (or something near enough like it that it doesn't matter for the sake of this story). They need help, too, and the amount varies from hour to hour, day to day. Right now, for instance, my brother has a cold, which sometimes has neurological consequences--his speech becomes slurred to the point of incomprehensibility and he can't control his body movements enough to walk or do much of anything. My mom can't follow verbal direction or find her way from one room of the house to another, let alone bathe herself, dress herself, or go to the bathroom alone. If she gets sick, which is likely to have neurological side effects, it could end up making her incoherent and leading to increased experience of auditory and visual hallucinations, and that's just a start.
I took the week off from work so that I could be with my dad in the hospital, drive him home after the surgery, and help out with what I imagined to be slightly increased needs. I was an idiot or in denial or something. I have until Monday, when I return to work, to find help in the form of in-home care of some sort. Otherwise I literally do not know what we will do.
Today, when I was finally able to make some phone calls, I spoke with a number of people in the home health field. What I found was that:
1. My parents' medicare insurance (with AARP part B) is useless when it comes to getting a care worker into the home for a 3-10 hour shift. They simply don't pay for that kind of assistance.
2. It is possible to pay out-of-pocket for a home health aide to come in for shift-work, but that costs something on the order of $25/hour, depending on whether it's for an individual or a couple. I have three people--the folks I spoke with didn't know how to calculate the hourly rate for three clients in one home. Not that it would matter. Getting enough help to allow me to return to work and get a full night's sleep would cost us no less (and probably significantly more) than $400 a day. It may be that we'll have to find a way to do that for a little while, but we can't afford it for long.
3. There may be a shot at getting in-home help if we can convince a doctor to prescribe it, basically, as a post-operative necessity. The surgeon who did the shoulder work can't do that because a shoulder injury doesn't justify such an intervention in the eyes of the insurance company. That is, he worked with my dad on one diagnosis, not on his pre-existing diagnoses. It's up to my dad's primary care doctor or neurologist to write the prescription. I left a message with his primary today--will call his neurologist tomorrow (Thursday).
4. Some other possibilities may be possible if we apply for Medicaid and do a waiver. But that process takes 90 days, and my dad will almost definitely not be eligible anyway, because it's for people whose medical needs are expected to last longer than 1 year, and I don't expect we'd get anyone who would say that a rotator cuff surgery will be problem for a year. This might be a way to go for my mom, and we're filling out the application, but at least one person has warned me that this will replace my mom's AARP part B with Medicaid, which has many negative implications.
I have so much more to learn, and I bear the blame for not learning it before this crisis. But I didn't.
Folks from our church are helping by sending meals, which is good. Some have stopped by to talk. Folks at Eastern are praying, or will when they get back from winter break to check their email. But I'm still feeling very much alone in the minute-to-minute caregiving and in the extremely frustrating attempts to get caregiving help in the form of some in-home assistance. And, like I said, I'm very aware that I have two business days left to make something happen. If next week arrives without an answer, we're in trouble.
Why write this? Because I don't think I can hold it on my own, and I don't want to overburden the handful of friends who have lovingly borne it with me. And I also hope that others will be forewarned that the healthcare system makes it very, very hard to get needed care if you are not wealthy. And, there's a little of me that feels like it's buying a lottery ticket; I win if there's someone out there who has even a fraction of a solution that can take me in the direction of needed help.
Thanks for reading this far. You already deserve more gratitude than I can express.
David Maness Krissy Maness Greg Maness Sandy Maness