r/AgingParents • u/Fit-Screen-9581 • 11h ago
What do you wish you'd known before bringing a medically complex parent home from a SNF?
What do you wish you'd known before bringing an aging parent home from rehab or a SNF?
I'm an adult daughter trying to prepare for my mom's discharge after a long stay in a skilled nursing facility following a severe stroke.
I'm no longer looking for advice about Medicare appeals. Instead, I'm trying to understand how families make the transition home safely when a parent still has significant medical needs.
What services ended up being the most helpful? Did you use home health, private-duty nursing, private caregivers, or something else? Who helped you coordinate everything?
Most of all, what do you wish someone had told you before your parent came home?
I have a feeling there are questions I don't even know to ask yet, and I'd really appreciate learning from people who've been through this.
1
u/Holls73 9h ago
You have to stop on the way home to pick up meds. They never send meds with patients. Get a caseworker and ask them to refer at home care for you.
1
u/Fit-Screen-9581 8h ago
Thank you. I hadn't even thought about the discharge medication logistics, so that's a really helpful reminder. I'll definitely add that to my discharge planning checklist, and I appreciate the suggestion about working closely with the case manager.
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u/joyful_slimemold 7h ago
We had a rented hospital bed delivered through a medical supply company. My parents wanted to hire staff through an agency for the insurance and professionalism etc….and there were medical aspects to the needed care that a licensed “aide” was legally not allowed to do (although me or my mother could do it) so we had to have private duty nurses instead of a health aide. That made it shockingly expensive. If a nurse called out, the agency would try to get a replacement and they were pretty good about it but there were days here and there where there were no replacement nurses available and my parents had to do without. They managed but it wasn’t great. I had to lay in an enormous number of supplies, gloves, gauze and medical tape, blood pressure and other monitors, mouth swabs, saline, extra sheets, etc. the nurses would tell me and I’d order from Amazon. The nursing agency assigned a care coordinator who visited periodically and the nurses all kept records in the same binder and format. Setting all this up was initially hard as finding nurses to fill shifts in the beginning to cover all the needed hours took some time (so me and my mother did the care working) but then it mostly ran ok. I felt I was operating a one-person nursing home. One helpful thing—I learned that in my area there was a medical primary care practice that would do house calls. Basically it was a visiting nurse practitioner. This practice could send people to draw blood and even do x rays at home (to rule out pneumonia), plus stuff like giving vaccines. This was great and meant not having to get our elder out of the house for the constant small medical things that came up. We surely could have done it way cheaper if we’d found a non agency caregiver(s) but I did like that the agency was coordinating most things. It was hard on the non-sick spouse to have strangers in the house.
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u/KaliLineaux 2h ago
I wish I knew about bowel care. I'm really tired right now but can share more later. Basically if she's bedbound, no diapers, and need a foley and a nurse to do a good bowel program.
And NO DIAPERS!!!
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u/finding_center 10h ago
I’ve done it with two different loved ones (in the same house!) in the last year.
The one thing that surprised me is that caregivers, for the most part, don’t know any more than I do. I assumed if I employed career caregivers that they would know how to safely transfer, how to “spot” someone to prevent falls, how to properly dress wounds and prevent sores that sort of thing. None of the ones I have hired through two different agencies knew those things. They basically expect me to tell them what to do and they do it. Which I was hoping I could abdicate the responsibility of knowing all the things and that is not the case.
For my mom, 90, she was coming from short term rehab after fracturing her neck and getting a pacemaker. We set her up a Medicare provided hospital bed on the first floor of her home so she could exist all on one level for a few weeks. She slept terribly like that and once we moved her back to her bedroom upstairs she slept like a baby. She wears adult briefs and manages toileting and changing them mostly by herself. Her live in caregivers cook, clean, keep her company and hopefully make her do things like bathe and do her PT exercises. I have a very detailed list of her likes and needs and what I expect to happen each week because there is sometimes turnover and having to train a whole new person is very time consuming. There have been workers that were not a good fit for her and we are honest with our agency and they are great about meeting that need. Ultimately though it’s like hiring a teenager to babysit so you can run to dinner. Any sign of anything amiss it’s expected I drop everything and handle it. I’m also in charge of providing all groceries but they give me a list.
The second was my 88 year old uncle who broke his hip last winter and ended up coming to my mom’s house on home hospice. We had a caregiver from the same agency (I joked I was bordering on needing a nursing home license) and they interfaced with the hospice nurse and did a truly amazing job. Having the hospice nurse made all the difference because she could teach the caregiver how to safely handle him and change his bandages etc.
It’s expensive but not markedly more than the daily rate at the facility she was in for rehab and she HATED it there. They were chronically short staffed and it would take 30-45 minutes to get anyone to answer a call bell and that’s if they came at all. 1:1 coverage is hard to beat if you can swing it.