Our update is that for lots of reasons after my last time w Mom, it occurred to me that maybe me visiting isn’t working for her. I ran this past Local and Preferred, who did not deny the observation and said well, maybe collectively we need to consider that when scheduling (we divide up appointments so nobody ends up with all of them). I won’t be back until her birthday in 9 weeks.
As far a practical results, we got stuff done and she is physically much better. She was happy to see DH. Preferred is working on sheltering her estate from various taxes , thinks she has less than a year to live (based on nothing in particular but caution).
We have stressed with them to never call any number or respond to emails. My husband is going to go over everything again when he sees them next week. Plus talking to their personal banker about how to protect their bank accounts.
I have someone coming to drive and help my sister this coming week on Thursday. I’ll go by and meet the person but I was pleased with her on the phone. She comes highly recommended by a good friend. I’m hoping my sister likes her and will commit to a long term relationship. I’d prefer her to not drive herself at all. In the meantime I have her car at my house so she can’t drive anywhere. Tuesday I take her to the surgeon for her post op visit.
Well, Dad was supposed to have NO water or food, and only an ice chip or two occasionally. I guess a nurse didn’t understand the instructions, because she gave Dad a few sips of water and he aspirated. He went downhill pretty quickly. This was a couple of days ago and I can’t even remember all the details. I do know his pneumonia has gotten worse as a result. I actually got a message yesterday that he’d been intubated, but that was a mistake, he was just in a mask. Today he’s doing better and is using a cannula, but higher oxygen than the standard one.
That’s a very brief description, I left out a lot of details. It’s been a rollercoaster for a couple of days. Good news, bad news, good news, bad news, good news…
My dad’s caregiver was out of the room when the nurse gave him the water, but she thought to video the woman’s explanation to the doctor about what had happened. Ugh, I hate hospitals.
That’s awful that the nurse didn’t read the chart or understand the orders. They should have a big sign that says NOTHING by mouth and it should be obeyed!
I talked to a speech therapist and the hospitalist today. Basically, they have to wean him off oxygen for several reasons. It will show he’s recovering from pneumonia, and he can have an MRI once the cannula tubes are removed (to see if anything neurological is causing difficulty with swallowing).
He wasn’t alert enough for the swallow test this morning. I don’t see how he will pass it so soon after his last episode, but I guess they’ll have him try. If he fails it, they’ll start considering a stomach tube. But that’s a surgical procedure that requires general anesthesia, so they would rather not use it unless absolutely necessary. On the other hand, they don’t like to use the nasal gastric tube he’s got now for more than ten days, typically.
The hospitalist said that in her experience, it can take weeks to wean elderly patients off oxygen. He’s still on the amped-up cannula now (I know that’s not the technical term, ha). In a day or so, they’ll start thinking about transferring him to a long-term acute care hospital. Ugh ugh ugh.
Meanwhile, I’m #69 (up 10 places in 57 minutes) to chat with a Google rep to ask for a refund of an app subscription we didn’t know we’d purchased on DH’s phone. How much work have I gotten done today? Zippo.
It makes no sense to “wean” him off O2 if his body needs the supplemental O2. I’d really question the need to do so and want the advocate to do this. He’s recovering from pneumonia and needs the O2 that his body needs for healing.
What’s the rush for him to have a surgical procedure? Why can’t he have IV nutrition until he fully recovers from his pneumonia? I don’t understand hospitals and them rushing patients and causing harm in the process.
My father has been on various levels of oxygen - both in and out of the hospital. It seemed like it was easy for them to judge how much he needed and to change the amount and delivery method as needed. So he went from the big mask thing to the little tube thing as his needs went down. I would speak to the nurse and she would say oh he is only taking x amount of oxygen today, an improvement from him using y amount yesterday.
It sounds like your father’s case is more complicated as he has both a nasal feeding tube and the nasal oxygen delivery.
No idea about your dad’s particulars but my BIL didn’t have a stomach tube soon enough. You need food. For some reason nurses thought an IV drip had enough calories to keep you alive. They do not.
Everyone wrang their hands about the dreaded “stomach tube” and how difficult it would be. Except the actual radiologist who finally put it in and announced it was “no big deal” to do it. Took about 20 min down in radiology and done with no ill effects. It was local anesthetic. Should have been done much sooner. It was my sister who finally talked directly to radiology, Should’ve sued them over lack of care. Rant over.
Anyway not all stomach tubes require general anesthesia. And don’t expect the doctor to know all about it–talk to the source. Get a radiology consultation.
Fwiw, my son had an NG tube for 40 days. Țhey changed it once a week. The worst side effect for him was a very sore throat – and while this is not the same situation as your dad, I’d think an abraded throat would be something they’d reasonably want to avoid.
Rehab again seems like a much more positive placement. Let us know how you are all doing.
Thank you! He had a good night. Slept the whole time and his lab work looks good. His advocate thinks we’re going to have to fight to get him into rehab, but we’ve done it before!
They want to send Dad to a long-term acute care facility - it’s NOT skilled nursing. There are only two facilities in a large area that have the necessary equipment and services he needs. Of course, the one that seems better is farther away from Austin, which will make it tough on the caregivers and Lady Friend. But most of the caregivers are willing to travel - we will reimburse them for their excess mileage.
They replaced his nasal gastric tube, and it was so painful that his caregiver was very upset. I’m not sure what kind of pain, we’ll have to find out. His labs and vitals look good, at least.
The doctor said they can’t do another swallow test while he’s so ill.
I admit to not knowing a lot about long-term acute care - if he is there will he need the whole team that has been with him at home? Or is it just the family preference to have someone “private” with him 24/7??
His advocate thinks it’s really important for a caregiver to be with him 24/7, so that’s what will happen. After seeing all the mistakes that hospitals make, I agree that someone should be with him. One time when there was not a caregiver present, he needed help and couldn’t find the call button. My sister said it really gave him PTSD - he’s very anxious about that happening again.
The LTAC facility is for stays 20 or more days. The case manager said that if he improves, they could send him to a rehab center in Austin that we like. It comes down to how long it will take to wean him off of oxygen and determine if he can swallow properly.
The bookkeeper looked it up and said the best facility is 58 miles from his apartment. It will be hard for his lady friend to get there. It’s too much of a drive for the caregivers to pick her up.
Wow… what a lot you’ve been through with your Dad. He is fortunate to have good financial resources and fabulous family support.
My sister is visiting with my Dad and his wife at their house. Different situation, and happily his health is pretty decent for age 99. But I’ll admit being a bit relieved to not be there in the stressful mix this week. My turn next month. For me though, I’m retired… have time for this more minor stuff. ML is a heroic juggler!
MIL’s hot water system died. One sister is there (local is in Europe someplace). They thought they would need to move the car…which is locked and doesn’t run…to remove the old system and bring in the new. No one has any idea where the car keys are at local’s house.
DH had no idea either.
Luckily, the unit was small enough to get past the car on one side.
The maintenance people showed up to do this…today…unannounced.
Agree that keeping the help paid is key to retaining them. Local finally found a really good, reliable aid for MIL. The aide’s D drops her off & picks her up, because she works the same hours nearby. The D had a baby last week, so she’ll be off for a few weeks … and aide doesn’t drive at all. We need her, so we made the decision to have MIL pay for her to Uber back & forth until her D returns to work. It’s $300/week, but it’s worth it to make sure we don’t lose the aide (and so that MIL will have her aide during that time).
