He’s been home for a week after 8 weeks of 1. A craniotomy, 2. Time in ICU, 3. ICU step down unit and 4. Skilled nursing facility for 3 weeks.
Question:
People advise me to take care of myself and not wear myself out. How? How can I possibly take care of myself when he’s in need of care all day and night.
PS He’s also a brittle diabetic, very determined to walk despite severe balance issues, and a retired surgeon.
Heres what I’d be concerned about, why didn’t rehab go beyond the initial 3 weeks? MediCARE post hospitalization rehab benefit will go up to 100 days if they are “progressing”. If he was discharged at 3 weeks, something happened to have it stop then. Either he reached a plateau and will not really get better / stronger / more cognitive OR something led rehab to believe that he would be continuing with rehab at home, that as a MD he would have something set up / know therapists and so a discharge back home made sense. You need to find out exactly what his rehab notes were and speak with his docs as to the specific in-home health nursing and therapists he needs. OR if it’s a plateau as that a different path as you’ll need to plan for caregivers to come in on a schedule.
Should your insurer not want to pay for in home therapists, do an appeal. Ditto for aides.
If insurance won’t budge on providing aides, I’d try to get hospice. Hospice is a 100% Medicare benefit and will send out an aide 2-3 times a week and an RN periodically. They will do health checks but also can do bathing and hygiene care. Plus get in equipment, like a pneumatic mattress and geri bathing chair, etc that will make a difference. Hospice does not mean death imminent, perhaps think of it as it’s more there’s a probability. My mom was on hospice 18 months and the bathing was just incredibly well done and the speciality mattress really kept her from developing pressure point sores. My mom was tiny so she could be adjusted or lifted but your hubs may need a Hoyer lift, which insurance or hospice should cover.
That your daughter is there to help is beyond wonderful. But you & her figure out and get on delivery services. Like Instacart does Rouses and Costco. Start using UberEats, Waitr, Drizly. It just frees up time. And time is going to be an issue as it probably will be the case that he’s going to need some degree of 24/7 oversight.
See how it goes through Carnival season. If need be then use Lent to look at places. If he was with Oschner, Lambeth/St Anna’s has a program with the O. Best of luck and get a good nights sleep.
NO LIFTING!!!
Get an OT involved, ask to be shown the right techniques, and get the right kit.* No lifting!
*Profiling bed, bed stick, grab bar, stand aid, e.g. etc etc.
feeling for you all with this
weve just been through a similar situ although my dads medical stuff has been UTI falls and kidneys rather than brain injury and icu which must have been so scary for you all. Dad came out after 10 weeks in rehab and hospital
get as much help as you can.
the last month has been exhausting; we had various carers coming in 4 times a day but two of those are for 10 mins change to nightbag and give meds, if you can get a longer period of care make sure you take a break - go for a walk sleep etc. we’ve got a good social worker who is working on getting regular carers in so relationships can be built, dad will be more comfortable with being washed etc (this was happening just before his seizure last week which put him back in hospital)
our social worker has suggested a full time carer and/or night care but mum is reluctant, I’m not sure how you would feel about that, I’m pretty much like your daughter but I don’t live there. I’m there most days and try and stay over when I can. Routine helps as mum knows when she gets a break.
get as much care and support in as you can.
A month on my mum is exhausted, she had no idea what was coming. I am broken hearted seeing my dad in such decline and my mum going downhill too. On the first visit, our OT went this is a long term care situ (hospital had said short term) and social worker wanted dad in respite straight away as she felt it was too much for mum, As dad is back In hospital we are hoping to get him into respite for a week or two so we can take a breath, sort out regular carers (him going back into hospital meant we lost our plan in the uk) and get a structure in that benefits everyone.
dont leave it too late in getting help, remember you are his wife too and want to have some coffees and chats together - having help will give you those times back. same for your daughter.
speak to your own/his doctor regularly so they are aware of everything going on. I had a call with dads GP to update him - discharge notes don’t always get there and dad was misprescibed wrong doses etc, so it’s been good to keep him fully in the know, and talk to them about how you are coping too. You need support with all the changes you are experiencIng and seeing your husband going through
we have district nurses in the uk which come by once a week too.
I wish you all well xxx sending love and hugs xxx
How you don't wear yourself out is by hiring help. Get a maid to cook and clean and do laundry. Get an aide to assist your husband. When this happens - get out of the house! Do some normal things like shop and go out to eat with friends. Go for a walk, etc.
If that does not work, your only option becomes placing him somewhere. He's probably too needy for assisted living so a nursing home might be the answer.
You need help so hire it. If you want a good night sleep, hire some one for night-time. Hire someone to bathe him if thats too much. If he bulks, you explain its not for him but for you. He can't expect u to do it all.
Do you have other family support? Friends? What support do you have? Did you realize the amount of care he would need on homecoming? Why did he not go to rehab for at least a month so that with care conferences you could decide whether or not he is safe to come home to the care of a wife who is also "of an age".
Can you afford support during the day? Agency help?
If he is determined to walk despite balance issues you are looking at a disaster about to happen.
Call the doctor today. Tell him you need support in a decision whether your husband should be placed in care of some type for a while; tell him you cannot conceivably do this alone.
And if push comes to shove and you cannot get help you need to call 911, have him transported to hospital, and get him placed by telling the Social worker on day one that you cannot care for him in the home.
Do you currently have visiting nurses? Who can you inform TODAY that this isn't working, because I am quite fearful for what could happen here without your getting immediate help.
I'm very lucky to have a husband with a sweet disposition, though he’s still experiencing delirium at times. We also have an adult daughter living with us who is extremely helpful when she completes her (virtual) workday. She’s become our cook and gofer when she’s able.
Our insurance covers home healthcare, PT, OT for a limited time. I’m just feeling overwhelmed and I dread starting each day cleaning, bathing, changing wet, soiled clothes, washing bedding over & over and helping lift my poor baby until he can lift himself into his walker or wheelchair.
I wasn’t prepared for this (who is?) but after a week, I’m feeling more confident.
I’ve also requested that our insurance provide an aide who can work early in the morning to help me get him up and ready for the day. If they don’t, I’ll hire someone.
Thanks for your advice!