PML

[Virginia]

Hope she stays a little longer - until she is more comfortable with what she can do and until husband is more comfortable with how she is able to handle things on her own.

[agate]

Hope she can make her concerns known to the staff. They might not be as aware of her condition as she herself is even though her awareness is impaired. They might be sending her home too soon. That seems to happen.

[SuzE-Q]

Or in the least, hope she can have home healthcare come in to ensure she's doing ok.

I'd have thought more intervention would be needed initially though, just to try to relearn things and facilitate healing of the damage beyond the use of medications, ie, physio, occupational therapy, etc.

[Virginia]

Is it just me or has anyone else felt that the drug company should have been coming into this and pushing for the best care possible? Or maybe they are and I don't know it.

[stillstANNding]

I agree w you all. And, I am wondering if she is supposed to monitor herself for IRIS. I believe that what I read said that the mean number of days to IRIS was 35 days. But I read until my eyes had over- use problems.

As of this morning she had not seen a social worker or nurse coordinator for home care.

ANN

[agate]

A few days to a few weeks, according to this article--which came out 6 years ago:

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[stillstANNding]

Friend is being discharged today. Very happy to be seeing her animals soon.

We talked about how she will remember to take meds and insulin. We talked about a check off chart. Then we remembered (again) that her vision and reading problem will make the chart impossible.

I hope they have thought this thru. Seems she should be going to a rehab hospital to learn to take care of herself.

Spinal fluild test for PML is not back yet.
ANN

[agate]

Could she have a visiting nurse to come daily to oversee the meds for a while? The hospital she's in should be able to see about arrangements like this--or no?

I thought they had human resources coordinators or patient services coordinators or social services people on the staff who are supposed to see about the patient's discharge plan and how to make the transition to home care possible?

[stillstANNding]

I agree, Agate. Discharge planning begins at admission. There are Coordinating Care Nurses and Social Workers. I don't know if any of these saw my friend. I know they want her to go to, "therapy." She needs someone checking on her. She could easily forget that she was using the stove or actually not see it. Meds and insulin can easily cause a problem. I don't think she can do her own blood sugars, either.

I am hoping info was shared w her that wasn't shared w me.

[nuthatch]

I hope she has someone to advocate for her. Husband, close family member or friend? If the doctor or hospital are unaware of the situation, a call is in order! Social services can be notified. They can visit and offer contacts for resources to help. Her doctor should be setting up home health nurse visits to monitor her condition, assess capabilities, and act as a link to the doctor.

As I've mentioned before, my 93 year old mother is almost completely blind now. She also has slight dementia and memory problems. Charts and lists are useless with vision issues, but there are many products available to help. Cognitive problems coupled with vision problems can be very challenging.

This is a California agency but your state may have something similar. My mom had problems finding the auto-dial buttons, like your friend, which was a constant frustration for her. After a little internet research, we found out about this program that provides free specialized phones to people who qualify (doctor simply fills out a form, which we downloaded, faxed to him and he faxed back). We got Mom the voice dialer, which is the last one on the bottom of the webpage. They sent someone out to teach her how to use it, and programed the phone using her voice.
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Mom also has Alexa to help with other thing. Technology is pretty amazing these days!
Only registered and activated users can see links., Click Here To Register...

[stillstANNding]

Thank you, Nuthatch! I'll have to talk w her husband, ASAP.

He just called and put her on the phone to go out to get take out food! I am not in the same state! I can not supervise! Friend and I talked about an evaluation by a visiting nurse to determine her needs.

ANN

[Virginia]

Ann, so glad you are involved, even from a distance. She could not have a more caring advocate.

[stillstANNding]

She called me mid-day. She is very goid in conversation and could easily pass as healthy. However she doesn't know how to "do." Fo instance, she doesn't know which pills to take or what they are for. She hasn't had a blood sugar or any insulin since she has been home.

She's had no breakfast. I suggested looking in the fridge for fruit and cheese. She knew there was coffee in the pot but had no idea how to reheat it. A whole list of things she doesn't know how to do. I told her to call her husband and ask for help. She already had. We talked for a long time and then he came home.

I told her to give him the phone. I told him that she could not be left alone, she needed help and to call her doc. I said she needed to be accessed (? Word) by the VNA and that had to happen immediately. I kept it matter of fact but very deliberate and on point.

She probably should have gone directly to physical rehab.

I hung up shaking w tears in my eyes. I hope I helped.

ANN

[agate]

ANN, you may have saved her life. She's so lucky to have you in her corner!

Are medical professionals really so careless and ignorant that they would send her home without making some provision for her care there?

I'm afraid that the answer to that is yes.

[stillstANNding]

Or else her husband said, "we've got this." Not!

ANN