Hi everybody, I've been reading posts on here for a while and have found it really comforting. Here's the context for my question in the title: 8 months ago, I left my job and moved in with my parents to take care of my father full-time. He's recovering from a broken hip and a TURP procedure to help correct his constant UTIs, and he came home from a short stay at a SNF (before I moved in) with a surprise stage 3 sacral pressure wound. He also has vascular dementia, aphasia, and is incontinent.
I'm around the house all day and all night to handle his medications and RTH bottle feeds (via peg tube), to help with repositioning & cleaning every two hours, and, of course, to help with home health visits (nurse 3x per week, PT 2x per week, nurse aide for baths 2x per week) and in-office doc appointments.
Thankfully, I know how to care for him because one of the hospitals allowed me to be there for 2 weeks straight and I ask a lot of questions whenever we see specialists.
Cleaning/repositioning him is typically a two-person job due to both his strength AND fragility (does that make ANY sense?). My mom, due to physical issues, isn't able to really be hands-on except in a limited capacity, so we have hired CNAs for day and night shifts. Thankfully, my mom has the retirement savings and income to support this level of care for at least a few years.
So, again, here's my question: if money was no object, what would the best possible option for in-home care be so that I could get decent sleep and perhaps even work a part-time job? Would it be a private nurse (or something more skilled than a typical CNA), and if so, where do we find them in the state of Georgia? To be clear, he absolutely cannot go to a facility (poor/neglected facility care is why we're in this position today). Our daytime CNA is very helpful and could possibly eventually do the job on her own, but my mom is spending a massive amount of money on weekend and nighttime CNAs that, while they are helpful as a second set of hands and mostly stay awake to keep an eye on him, still require my constant presence. I only sleep a couple of hours at a time each night between repositions/cleanings and it's exhausting. If my mom is spending a ton of money anyway, how can that money BEST be used so that we're all able to sleep reasonable hours and still tend to our own personal health during the daytime? Just to clarify, we would ABSOLUTELY still be extremely hands-on in all aspects of my dad's care- this post is NOT me looking for a way to not be involved anymore- we just want to figure out the best possible arrangement where I can step back when I need to and be well-rested WITHOUT any detriment to my dad's quality of care. I completely see that caregiver burnout is so real and so highly probable.
My dad's come a long way already over these past 8 months and I'm so proud of him for still wearing a big smile on his face when we give him hugs in his bed. He's been through a lot and deserves a real chance at finding a new healthy baseline.
Thank you guys so much in advance for your advice.
I can't imagine that any facility expected that a patient could go home or to a SNF with the level of care you describe.
My DH and I (second marriages for us both, are 68. My ex and his wife are 69 and 71.
Among us (my DH and ex), we have 4 kids, ranging in age from 41 to 37.
What I want to tell you is that is no way on earth that ANY of us would have found it acceptable for any one of our kids to leave their employment to become a caregiver.
I could imagine accepting one of my kids taking a brief leave of absence to get things set up in an emergency, but not long term.
I completely understand what you're saying about leaving employment to be a caregiver. However, I will say this: although I miss working, I absolutely do NOT miss the office job I had before, and I was already trying to find a new professional path. And, as difficult as this situation has been, it's undoubtedly brought me closer to my dad than I've been in a long time. Ever since he suffered a series of silent strokes a few years ago (leading to aphasia, leading to vascular dementia), a lot of our interactions have been me trying to explain things to him or keep him from hurting himself/others accidentally- and a lot of those led to me getting frustrated because he's strong-willed. The silver lining here has been all of the hugs, "I love you"s, laughing, looking at pictures together, etc. Even amidst a terrible situation, I'm really grateful for that aspect of it.
I don't think anyone ever brought up an acute care hospital; I'll look that up to see if it seems like a good fit for his overall situation.
Thank you so much for your perspective, Barb. I'm really glad I found this community to learn from!
We were extremely fortunate that at the end of one of my mom's hospitalizations, we had a REALLY great RN as a dishchage planner. She could see the "deer in the headlights" look that my brother and I gave her when she asked about mom's financials; fortunately, we had savvy SIL with us (she had been down this road with HER parents) and she was able to lay out exactly what mom had. The discharge nurse explained to us that we could get mom into a better NH by (but one that took Medicaid) if she was able to private pay for at least 2 years--this is not allowed in all states). And she strongly recommended one particular place, based on the fact that mom was very Catholic.
Look, it wasn't perfect; no place is. But the took us (and my mom) seriously and they took much better care of her there than we could have at home, no matter how many CNAs we could have hired.
Just give the long view some thought; I know that I always felt like I was running around putting out fires until I gave the big picture some thought.
Isn't it amazing? Folks like that great RN that was your discharge planner really do make a huge difference. I will say that we've been fortunate enough to come across a few people like that in this journey, and they've been such a blessing.
That's a good idea to look into about the 2 year / private pay deal. Unfortunately, I will say that my dad's broken hip actually happened in a hospital; that same hospital coiled a feeding tube in his throat, diminished his ability to swallow, he lost ~30lbs from not getting fed there, had severe oral thrush, and a sacral pressure wound...and then, later in this process, I stayed up for 15 days straight in the next hospital getting that pressure wound and thrush cleared up, then he went directly to 18 days in a SNF for that broken hip, which resulted in zero PT and an undocumented/surprise stage 3 pressure wound when he arrived back home. Anyway, all of this is to say that my family feels strongly that my dad simply can't be in a facility (particularly not with COVID-era visitor policies). The lack of accountability and advocacy on his behalf means that he's a prime candidate to get ignored, mistreated, and/or overlooked due to his dementia. I don't mean to sound paranoid, because I'm a massive supporter of science, medicine, healthcare workers, all of it- but I feel like this whole situation taught me that my dad really truly needs someone looking out for him by his side.
Thank you, Barb, for the "long view"- that's truly much appreciated.
You have 2 declining and elderly parents living at home.
There is a pile of money being spent on weekend aides but YOU are still the person doing most of the work. You don't say how old you are, but lack of sleep is going to have a huge impact on your health. Not even going to mention your financial health.
This is altogether unsustainable. I think the money, time and effort would be better spent getting both of your parents into a good facility and perhaps hiring extra help there to tend your dad's needs.
I really do appreciate getting another perspective on this- however, my mom IS able to function on her own. Mentally, she is still sharp, and her physical issues basically mean that she can't lift my dad up, bend over for an extended period of time to clean him up, etc. She's a big help when it comes to laundry, running water for his bed baths, ordering supplies, and of course, holding hands and supporting my dad emotionally.
I'm 37, and you're right. My financial health and actual health (due to lack of sleep) is NOT going to last long if things continue the way they've been these past 8 months.
For context, she's 70 and he's 71. I was about to continue replying here, but I think the next reply fits your next response better, so I'll jump to there. : )
The fact that he can stand and pivot is a huge benefit, when not in bed my mom lived in her tilt in place wheelchair with a ROHO seat cushion - the cost of both should be at least partially covered.
He can't technically pivot yet- and him standing requires someone on each side of him to help him start the process, although he can support himself up from there- but this is all a very recent PT achievement and he's showing improvement each time. We're excited about starting to work with PT on sitting up from the bed and pivoting from there, though.
We do have a reclining wheelchair with a ROHO cushion- those have both been great so far (we had another cushion before the ROHO that clearly wasn't as comfortable). However, it's still tricky for him to be in that chair for a long time due to the sacral pressure wound and ossification of bone at his previously-broken hip.
My hope is that a lift chair / geri chair may be a comfortable solution for him during the daytime to get him out of the bed.
You are doing a lot and may need to protect your respite time.
You ride a bicycle?
And what it mom were to get sick and need 24/7 care? Yes, 24/7 care is very expensive! I am sorry you first experience with a nursing home was bad. What sorts of problems were there? Not ALL nursing homes are bad. Did you check Medicare ratings on nursing homes in your area.
What about your retirement? What if all of mom's and dad's assets, including the house, were spent on their care and there was no inheritance remaining? Would you be able to pay for your care if needed?
Your family really needs to get guidance from an elder law attorney to get things setup properly so mom is not left indigent because of increasing cost of dad's care. Naela.org and nelf.org
Two on duty is something I've thought about for a bit, but in all fairness, that would REALLY limit the length of time that my family could sustain this for. Perhaps that's something we just do occasionally, maybe a few times each week?
Yes, these caregivers are legally hired through an agency, although we are about to hire one privately and will be doing it as you (and my CPA) recommended: taxes withheld, SS contributions made, etc.
I completely agree that not all nursing homes are bad. We absolutely checked Medicare ratings, but there were very few that would accept my dad's case. The issues we ran into were greatly accentuated by COVID protocol; my dad cannot report/complain/call for attention if he hasn't been repositioned in hours (not that he KNOWS he has to be repositioned every 2 hours). The lack of accountability by not allowing anyone in facilities as an advocate for him means that he is the easiest patient to ignore, and when problems come up as a result of that, it's just a "progression of his disease" (dementia). There was one hospital that allowed me by his side as long as I was "working" to take care of him, and they were fantastic- I learned a LOT and that's been invaluable these past few months.
You're right about my retirement; I would not be able to pay for my own care if all of my parents' assets went to their care. Me asking this question was absolutely not that we have limitless resources; it's more of a way of thinking. Like, "if there was no limit to budget, what would be the best possible solution to make things easier on us while still having us involved because we want to be?"
I will be reaching out to an elder law attorney for help on this- thank you so much again.
You already have way more assistance than many people do who care for a loved one at home, I think that your lack of trust in the abilities of your hired help and your compulsion to micro manage are the real problems. It's hard to step back when you know that things won't be done up to your (perhaps impossibly high) standards but at some point you have to accept that the care provided by other people although not the same as what you might provide it is good enough.
Thankfully, he's not a large man. He's 6'1" and now we got him up to 130lbs (long story short, he went almost 4 weeks in a hospital without getting fed and his weight got down to 112lbs). He clearly has some fear/trepidation about being rolled out of the bed, because sometimes, he'll grab on to the rails and push back, and he is STRONG. This is mainly why we assume this is a two-person job; also, he has particular body parts (one leg, toes, one hand) that are particularly sensitive due to some other issues, and one person rolling him may have a hard time being cautious enough with those other issues.
Honestly, as I'm typing this, I get what you're saying. Does this REALLY have to be a two-person job? If it's a one person job, then any hired hands coming in would solve this dilemma. However, I suppose that leads me to my real problem: where can I find people who are skilled enough to handle this on their own? This sounds silly, but do I keep just running through the CNA roster at this agency to find the couple of gems? Or is there a better path to find ONE highly-skilled individual for each shift?
We do already have an alternating pressure mattress. He arrived home at the beginning of all this with a surprise stage 3 sacral pressure wound, and since then, we've been seeing a wound specialist every few weeks. It's gotten MUCH better, but still has some depth to it (due to a scheduled Urology surgery in early August that set us back a bit due to lack of proper wound care in the hospital). We use wedge pillows to greatly "tilt" him in the bed on alternating sides every couple of hours, and thankfully, we have been able to avoid additional pressure sores this way.
Regarding him being bed-bound: PT has been helping him with standing (with the general idea that it would help to have him stand from the side of the bed to be assisted into his wheelchair or any other chair). He can now stand (assisted) for 3+ minutes multiple times in a row at the kitchen sink (holding on to either the sink or a walker). If we put him in his wheelchair for too long, he gets sore/uncomfortable from the pressure wound on his sacrum; he's incontinent and was getting chronic UTIs, so we had to contain his urine and BMs with hospital-grade chucks (that were more breathable than diapers). I'm in the process of trying to get a geri chair / lift chair as ordered by our orthopedist, but was just told today that Medicare will only cover the lift mechanism part of it. We may just end up purchasing used locally or off of Amazon if that comes out less expensive...but I agree, I imagine it would be helpful if he was NOT in bed for at least a few hours every day.
I appreciate what you're saying in closing here, and you're absolutely right. Some of the hired help is WONDERFUL and I am so deeply grateful for that. Maybe if I can formalize what my dad needs each day (in the form of a spreadsheet/checklist), that may make it easier for other folks to follow along. We've sacrificed so much and worked so hard for months to get different issues better (including that pressure wound), and the last thing I want to do is go backwards on progress we've made. If I could just find a couple more people that can work at a high level like one of our CNAs in particular, that could really change things.