Mom is 81 and was living in her own home still and able to do all tasks except bathe without help until mid-June. She was running fever and went to ER and physicians who couldn' t diagnose until she finally was admitted with pneumonia. She improved with antibiotics and care, and was dismissed. The root cause was a swallowing disorder allowing her to aspirate, but this wasn't detected. A week later she was judged healthy and pneumonia free by her Dr. I left on a vacation and two days later my handicapped brother called an ambulance to take her back to the hospital when a fever and symptoms appeared, but they took her to a different one with a bad rep. This one found the swallowing difficulty,but kept her npo for half a week before tube feeding. I arrived home after six days to find her talking and mentally aware, but her short term memory loss had her pulling out tubes and IV's so they were tying her to the bed. She has hearing loss, and they were not speaking so she could hear, and instead forcing her legs apart to clean her as they refused to let her use a chair and put in a foley and diapers. She woould scream and fight. I can only imagine what she went through before we were back to speak for her. They insisted on the peg tube and she was talking and herself following surgery. The next day she couldn't speak legibly and was visibly frustrated, which soon became a lack of response and constant moaning. They were not giving her any type of pain med and the moaning ceased, but she wasn't responsive. They did an MRI, said she didn't have a stroke and this was her "new normal". She never received the PT for swallowing they promised in that whole time. Even though she began talking again, they booted her out to a "skilled care" that, in spite of us being there at least eight hours a day in shifts, took her from standing, and talking, walking with help, using the toilet for BM when she entered through 12 days of extreme constant diarrhea, return of high fever and pneumonia, and a septic UTI to the point of near-death. I had an ambulance take her to another hospital and they hooked her up to ten different feeds and gave her a transfusion, because her blood count was extremely low too. The second day, she was her old self, talking to us normally, worrying about everyone not having a seat. Since then she has been sleeping most of the time and speaking little. She moans and fusses when they move or hurt her. She has spoken a bit more on several days, but lapsed back into sleep. Due to the trauma of being on a Foley with an extremely septic UTI for a month, she now can't void without catheterization and is colonized with VRE, a vancomycin resitant bacteria in her UTI, although it is not actively affecting her. She must be tube fed, diapered, cleaned, rolled in her bed. She sleeps 95% of the time and sometimes doesn't appear to recognize us if we wake her. She can't walk or sit up and there is no attempt to help her relearn this and get her back in the world. She could still aspirate reflux or saliva and die as they never fixed what was actually wrong. Insurance won't pay for any care as they state she is incapable of rehab. The hospital was going to send her home with just a bed! They are going to put her in a nursing home instead and we must liquidate her possissions. Unfortunately, that puts my disabled brother out without a home and he can't afford one on his benefits. I don't have much faith that she will last in a home without our oversight, not that it helped much last time. I feel she might get some of herself back if kept at home and had intensive PT. However, we are not financially or physically able to supply th 24 hour nursing she currently needs. Do I just let her sleep the rest of her life away? I know she is exhausted after battling this for two months. I don't know what to do. The choices are to put her back in the horrible home that almost killed her or put her far away where it would be hard to see her daily.
In this case, the peg was the right thing to do. She aspirates any other way. Lucky that was eventually diagnosed. Sometimes things take time.
Give her time to sleep and recouperate. Don’t allow her to stay in her room 24/7 because as her nutritional status improves she may improve as well. Get her out in the LR 1-2 a day. She is no doubt exhausted.
I rarely say this but give her a month or two. If she doesn’t improve then re-think the SNF Route.
Ask her PCP to order home care with SN,PT, ST & OT. I was a home care RN & it was common to have a few visits after dc to help the family & patient get comfortable with everything. Tube feedings get easier with practice
I think from what you say about the beginning of all this, and unless she has Parkinson's or Lewy's which cause some swallow deficits, that your Mom may have had a stroke. Almost certainly something other going on with the blood. I am quite amazed that no one has discussed hospice or palliative comfort care with you and discussed it in depth. I am so sorry about the awful decisions facing you now. A miracle could happen if you choose to fight. I think the odds are against you, but I know not to place any bets on any thing. I am so sorry for all you and your Mom are going through.
How is your brother being supported at the moment? Is he able to function on his own?
So, is your mother currently, right now, in hospital? Is there a social workers' office in the hospital where you can get help and advice about options for both of them?