checklist for care of bed-bound patient
April 6, 2021 10:18 AM   Subscribe

all of a sudden, I'm a caregiver. I need a list.

A close relative has suffered an acute injury that has rendered him unable to get out of bed, hardly to move in fact, without excruciating pain. For reasons, I and my siblings - none of us with any relevant experience beyond basic parenting - are the caretakers for the next couple of weeks.

The pain is bad enough that it has to be avoided at almost all costs. Due to the current insanity of the US regimen on narcotic painkillers, the pain is not controlled. We have set up a bedside commode and he is able - just barely - to swing himself out of bed and onto it for couple-times-a-week bowel movements. We figured out a solution for wiping, though I bet it's not the orthodox method. He has a urine container thing for peeing; that's easy. We are taking care of food.

He is cogent most of the time and able to direct us as to what he needs; however some things have slipped through the cracks; and in many cases it is up to us to suggest things. Like it was a few days before I remembered to suggest he brush his teeth (which should have been obvious, but we were so focused on trying to minimize pain and figuring out the toilet situation that it didn't bubble up to the top of the list right away.) Clean underwear. Stuff like that. And I imagine that there is a lot we're missing, though we're trying to think of everything.

My question is: can you point me to a published checklist for tasks/elements to deal with? (Not looking for recs for treatment options; that's in motion.) I'm talking about a task list for caretakers and patients in this situation, that we can use to optimize our routine and forestall avoidable problems.
posted by fingersandtoes to Health & Fitness (12 answers total) 5 users marked this as a favorite
Caregiver task sheet and caregiver checklist will give you lots of results. This excerpt from the AARP checklist for family caregivers (link to PDF) on their website gives a very comprehensive overview. Pages 18-19 will be most relevant to what you describe.
posted by pendrift at 10:32 AM on April 6, 2021 [2 favorites]

This is a huge undertaking. My first thought is, what support do YOU have? I'm talking about medical, practical, and emotional support?

Someone who has recently become bed bound from a severe injury should have been approved for home health of some kind, ideally a nurse, a PT and an OT to come to the house a couple times a week. The OT in particular can help identify what equipment would be helpful and how to safely use it, including for toileting and hygiene. The PT, OT and nurse can help coach you all to avoid further injuries to yourself or the person you are caring for - this person is at major risk of falls right now. The nurse can help identify the medical needs including adequite pain control! If you do not have this, please schedule an urgent appointment with the primary care provider and/or the surgeon or discharging doctor and request this!

Immobility is dangerous. This person needs adequate pain control so they can mobilize as much as possible. They risk all kinds of complications from pneumonia to life-threatening blood clots if they remain bed bound day and night.

I don't know of a checklist like what you're asking for, but I'm a nurse and would love to help answer further questions as they arise. Feel free to message me here and I can share my number and email with you.

posted by latkes at 10:54 AM on April 6, 2021 [17 favorites]

The brother-in-law of a friend of mine wrote a book about his experiences being bed-ridden with a botulism reaction, and a year and a half ago when my Dad was diagnosed with terminal brain tumors, it helped me a lot in understanding ways that he was likely experiencing his bedridden state, and ways that I could help. Anyway, the book isn't a checklist, but helped me with perspective: A Fallen Marionette: I Was A Prisoner Inside My Own Body
posted by straw at 11:31 AM on April 6, 2021 [3 favorites]

Latkes is a nurse, and I was a patient who was largely bedridden for a few weeks in October - albeit to a lesser degree than it sounds like your relative is. (I broke my knee and I was largely stuck in bed for the first 3 weeks with a big-ass plaster cast on.)

If you're comfortable memailing me details, I can see if anything I had might help.
posted by EmpressCallipygos at 12:10 PM on April 6, 2021

I can't advise you on how to go about preventing them, but I can tell you you need help in finding out how to prevent bedsores. They can develop extremely quickly if pressure points aren't relieved regularly and, depending on their severity, be very difficult to treat as well as very painful. Bless you for taking this on. I hope you can get some professional support soon.
posted by kate4914 at 1:51 PM on April 6, 2021 [3 favorites]

Best answer: If your relative has insurance or can afford to throw some money at a rental, an air mattress (designed especially to prevent bedsores, not the camping sort) will make a world of difference. Can't link from mobile, but if you Google air mattress bedsores you should be able to find some resources. Good luck.
posted by kate4914 at 1:56 PM on April 6, 2021 [1 favorite]

Response by poster: followup Q: is an OT the professional with the knowledge we need (e.g. how to achieve a bath)? Would I get one by having his GP prescribe such care? The doctor who was managing his injury (not his GP) has not offered this prescription/ referral -- was this just oversight/incompetence or is it generally done by someone else (maybe the GP?)
posted by fingersandtoes at 2:54 PM on April 6, 2021

Best answer: Are you here in the Bay Area? Location/insurance does matter to this answer.

When this person discharged from the hospital after their injury and/or surgery, the discharging doctor should have written an order for Home Health. Home Health could/should have included Physical Therapy and Occupational Therapy (OT). OTs absolutely help you learn how to achieve a bath and recommend the tools you need to do that safely.

If the hospital did not send you off with Home Health, I would immediately reach out to either the GP or, if there is for example a surgeon still following along who is going to see the patient again for follow up, you could reach out to them. Let the doctor know this person is almost totally bed bound and in severe pain. Neither of these are normal findings. Request they consider an order for home health as soon as possible. Make clear you need help with bathing and other "activities of daily living".

Without knowing more specifics I can't answer if there was an oversight or incompetence or just sometimes people do make incorrect judgements in the medical setting.
posted by latkes at 2:58 PM on April 6, 2021 [1 favorite]

Best answer: Note that if you just ask for an OT (not home health generally) they may order outpatient OT, where you would have to bring your family member to an outpatient setting to obtain this therapy and training.
posted by latkes at 3:00 PM on April 6, 2021 [1 favorite]

Best answer: In addition to his GP and the doctor providing care for his current injury, you could try reaching out to his medical insurer - they often have case managers for people with complex medical problems (I know, insurance companies are nightmares but this is a situation where both you and the insurance company have a shared goal: to keep your relative out of the hospital).

Home health can include visits from various kinds of caregivers - nurses, PTs, OTs, and home health aides (who can help with things like bathing and toileting). And a visiting nurse would definitely be able to advocate for a change in pain management if that's warranted. Definitely pursue home health services! They will often send a nurse out first to do an assessment and help figure out what services the patient will benefit from.
posted by mskyle at 3:22 PM on April 6, 2021 [2 favorites]

Response by poster: I'm going to update this in case my experience turns out helpful to someone else:

The medical team here screwed up horribly and the entire bed-bound scenario was based on an error. We spent a month of physical agony, terror and humiliation (the patient's) and psychological trauma, terror and loss of income (the caretaking family) because the medical team didn't realize that the scan indicated a problem that needed to be fixed with a surgical, not medical, treatment.

The lesson here is, if you've received a "shrug! I guess we'll just wait to see if it gets better" diagnosis from a medical team, and it DOES NOT GET BETTER, seek an opinion from a different kind of professional (in our case, a surgeon solved it) and get the scan itself in front of them, not just the report.

Good luck out there.
posted by fingersandtoes at 9:35 AM on May 8, 2021 [1 favorite]

Wow that's horrible. Thank you for updating
posted by latkes at 1:10 PM on May 8, 2021

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