DH in the hospital for 3rd time in 10 months

Belle

For the third time in less than a year DH has been admitted to the hospital for a skin infection. This time is the worst so far, I'll spare you the details but he's looking at at least 6 weeks with a wound vac. Since he has no clear cognitive impairment diagnosis in his records no one is listening to me about anything. I told both the surgeon and the patient advocate that he is under the care of a neurologist and is scheduled for his 4th round of neuropsych testing in August. I've told them he won't shower and nothing I do works at getting him in the shower. They know it's his 4th infection in 15 months.

I have repeatedly asked for a referral for in patient sub acute care when he's been released usually with an IV port for daily infusions but this time an IV port and a wound vac The last time I even hired a geriatric care manager and we were looking at temporary placement. The hospital refused to return our calls and then released him on a Sunday (I was home taking care of our dogs) and let him get in an uber to come home. And the shift nurses were constantly telling me he was not impaired because he could talk to them!

This time they are planning on releasing him to home with home health visiting every couple of days. I did mention I thought it wasn't a safe release but got ignored and I have nothing, such as a solid diagnosis of his cognitive issues, to back up why I think it's not a safe plan. You think someone would be questioning how he got 4 infections in such a short time or why he's getting another round of neurpsych tests or why he's getting annual MRI's of his brain, and so on. Sorry, just venting at this point but I'm tired and had to postpone my own diagnostic surgical procedure this week to deal with this latest crisis.

jsps139_

Oh Belle … what a disaster! If the criteria for dementia was whether our spouses could talk to the medical staff or not, hardly anyone would have dementia according to them.
Isn’t there someone higher up at the hospital that you can speak with? I feel your frustration, and I feel so bad that you have to deal with this.

easy23

I'm sorry you're having to go through this. Have you spoken to your husband's social worker or case manager? By any chance, could your husband be telling them that he wants to be discharged to home?

ronda b

Is it possible for him to see his neurologist or a neurologist while in the hospital? Maybe they can give him a mini test to test his cognitive status so aleast it would be on file for social worker when being discharged

​fesk

Belle, this sounds like a terrible situation. I am sorry you are going through this. From the difficulty you are having, it sounds as if you don't have a power or attorney (health) in place. I would speak to an elder law attorney if you do not.

Belle

I agree with everyone, this isn’t a good situation even the geriatric manager was frustrated last time. She told me she was convinced he would need professional caregiving within six months. I am going to try to track down a social worker tomorrow. That’s good advice and now I realize I haven’t seen them yet. And he very well could be saying he wants to go home too.

I do have all our legal documents in order but his healthcare POA only kicks in when two doctors declare him incompetent. About six months ago he scored in the low 20’s on the MMSE even after scoring terribly on two portions of the longer neuropsychiatric testing. I mean like one sub test score was zero and his overall score in that category has dropped by 50% in about 6 years. I don’t think the MMSE is going to help me here unfortunately. I was really hoping he’d show further decline in the August testing and they would finally give him some sort of diagnosis that sticks. Maybe because his cognitive issues are more in line with VD and he’s under 60 and his autoimmune disease can also cause neurological problems I think they just don’t see it.

ButterflyWings

Email someone at the hospital - social worker, ombudsman, etc. and state that it is a "serious patient safety issue" to discharge him again, and "under no circumstances should someone with cognitive impairment be sent home alone as before" (if it was this hospital). State that as spouse and primary caregiver you are repeating that it is "unsafe for him to be released to home at this time".

The written record often gets additional attention that our verbal pleas do not.

M1

This is good advice Belle, i would put in writing that you do not feel that he is safe for home discharge and i would push the doctors caring for him to sign the letters of incompetence.

SDianeL

I got my husband to shower 2x a week by telling him the doctor said he had to. I chose Wed & Sun. Then I got his shower all ready and told him it was Wednesday and his shower was ready. It worked! I read the book “The 36 Hour Day” that really helped me get him to shower. Put your concerns in writing to the hospital. Ask if they have a Patient Advocate.

Belle

Today's update, the cliff notes version, is that DH is refusing to go to rehab even though the doctor is recommending it for wound care.

I hadn't received any calls from the new hospital, they moved him last weekend, because when they asked for my number he gave them his number instead (the hospital is a good distance from where we live). Today I got this info by calling the social worker and the doctor is going to call me tomorrow. Luckily they haven't released him yet. But he told them he plans to go home and handle this as an outpatient as of this evening.

No one is willing to declare him incompetent, not sure if it's because of how he presents or because he has neuropsychic testing scheduled a month from now. I have said this isn't a safe release because he's not showering or changing his clothes or allowing me to help him, he's telling them he showers and manages just fine on his own. Not looking for any advice tonight just sharing this update.

Almost forgot to add that I have read the 36 hour day 3x in the past 5 years. Trust me when I tell you I have tried every trick I have ever read or heard about to get him to shower or change clothing. Nothing works. All I can do at this point is tell every single doctor and hospital that he is refusing any help with hygiene to cover myself and hope someone will clue in that he cannot manage himself either. I am sure of one thing and that is he will be back in the hospital again for the same issue at some point in the near future.

Pat6177

would it be possible to get a durable medical POA signed by your DH? Seems like it would even be worth it to pay for the lawyer to come to the hospital and get it done. It would make your life so much easier. I think I am using the right term “durable”. You need a POA that doesn’t require 2 docs to declare him incompetent. You are in a tough position, I’m sorry.

ThisLife

I believe a durable medical power of attorney can allow you to act but it does not allow you to override his verbally expressed wishes. What he says is what will be done. My experience in NV and FL is that you would need to obtain guardianship even for a spouse.

jfkoc

For some reason we all think that a hospital will be able to care for/watch over our loved one when they are in the hospital.

They just are not going to. Someone must be with the patient…sometimes 24/7.

Belle

I am not worried about how he is being cared for in the hospital. I have access to his notes and everything is well under control. I did feel ignored but it turns out he is the problem and not the hospital staff. If I call them they update me but he is telling them not to call me, wouldn't give them my contact info, etc.

Here's the bottom line he is refusing to follow any orders they are giving him, they won't declare him incompetent and I cannot override his decisions. So after multiple discussions with various professionals I have been advised to keep my distance and let him 'show' himself to the doctors in a hope that someone finally says he is impaired and turn the decision making over to me.

If I thought he wasn't getting adequate care I would be there or hire someone to be there with him. I have done that in the past and would do it again now. He will always get good care, I am not abandoning him but it probably won't be me doing the hands on care giving, after 30 years of caregiving for him I am burnt out and my own health is being impacted (see previous comment from me about postponing my own, needed, surgery last week to deal with this crisis).

Bottom line is he needs placement due to his comorbidities and his worsening cognitive state but at this point I have no legal way to make that happen. We are getting closer though. In this afternoons notes the doctor said that after talking to him for a while it appears he may have some memory deficits and made some comments about his behavior.

I apologize if I sound short or defensive. This is probably my last update about this situation. I have a consult to set up with a care manager tomorrow and need to gather hospital records for that meeting.

midge333

Good luck! I hope everything comes together for you.

JeriLynn66

Keeping you in my prayers Belle.

MN Chickadee

What a difficult situation. It sounds like your course of action now is appropriate; you have done what you can and now you just have to wait. Many of us have had a situation in caregiving where we wish there was something we could do but in the end just have to wait for something to happen and trigger everything. One thing you may want to do now is research inpatient geriatric psych hospitals/facilities. When he does get released, whether he is at your home or a memory care facility, it sounds like eventually his obstinance may be an issue and he may need inpatient to get meds that stabilize his behavior and make care more possible. The care manager could help with that so you have a plan when you need it. It sure would be nice if the hospital would transfer him there now (many PWD end up there after a hospitalization for something else) but doesn't seem in the cards does it. Hang in there, thinking of you. I hope you get the care you need for your own health.

harshedbuzz

@Belle I am sorry this situation is so unusually difficult.

Your current plan to allow the other shoe to drop is what I was eventually worked in my situation. I'm just sorry it's come to that for you.

HB

M1

Yes it's awful and I'm sorry. I have to say i have yet to see any situation for which a springing POA was appropriate. I suppose the point is to prevent abuse and preserve independence, but they only seem to cause unnecessary difficulties.