When should the nursing home be asking for my consent, or even contacting me about things?

H1235

Mom is stage 4. She presents herself as very confident and self assured. In her mind she has no business being in a nursing home and is perfectly capable of living in her home alone. I am the DPOA and have a letter signed by two doctors stating she is not capable of making decisions for herself. The the nursing home has 360 care come in to handle things like eye exams, podiatrist, dental etc. I signed paperwork consenting to these visits. A few months ago mom got a new pair of glasses. I was never notified or asked if I agreed. She had cataract surgery less than a year ago. She only needs readers but mom has been snippy for a while now that she wants regular glasses so she doesn’t have to deal with searching for readers when she needs them (it is annoying I get it). I haven’t done this because I really didn’t think she would wear them and she doesn’t read often (or at all). I only saw her wear them the first week she got them, haven’t seen them since. Then mom tells me she saw the dentist and she is going to need a crown (which will need to be done at an actual dentist office). I was told absolutely nothing about this. I called an set up an appointment with a dentist that accepts Medicaid, but I really have no idea what she actually needs. Yesterday when I visited someone was leaving the room and told me she had just picked out a new pair of shoes. Some kind of special shoe for diabetics and people with foot problems. Again I was not consulted or even informed of this. When I took her to get new pajamas she was looking at black lace negligees. Now I know the choice she was given are probably all pretty reasonable and I would hope the person helping her would lead her in the right direction, but still. Yesterday she told me she is going to start pt. I have heard nothing about this. The audiologist told her she needs hearing aids. Mom told them she has them but I won’t bring them to her. She hasn’t used them in 2 years and has no idea how to. Even if you get them all set up for her she pushes buttons and fusses with them within minutes til they aren’t working correctly. I have a letter signed by two doctors stating she is not capable of making decisions for herself. The facility has a copy of this. She is not aware of this letter and would be absolutely irate (probably just with me) if someone were to suggest they needed to clear something with me. I called today to express my concerns and they said they were just trying to keep her comfortable, do you not want her to have these services? I explained that I wanted the services I just wanted to be informed of what is happening. He says so you want us to call you every time she sees someone. It’s not like you have paperwork signed by two doctors saying she can’t make decisions for for herself. I told him that was exactly my point, because I do have that paperwork. He said he would have the social worker call me. I’m not expecting a call. Am I be too controlling? Am I out of line? They insist care meetings must include mom, so they are an absolute joke. I’m so frustrated.

jen ht

I'm sorry you're dealing with this. I don't have answers to your questions. Just wanted to express solidarity that this road is so hard. Ugh. I wish there weren't issues like this to make it even harder.

Maybe this would be a good thing to pass by the Alz Assn 800 number helpline folks? Or the ombudsman?

I hope someone will come along with ideas or answers for you.

Take care,

Jen

April23

You are not out of line. My dad also uses mobile providers. I will say that I spend a fair amount of time staying on top of the scheduling and am there for most visits or speak with them before or afterwards if I can’t be there. One time the eye dr came without my knowing and I was pretty upset but since nothing happened and they don’t charge my dad for anything I let it go (but canceled their services since he was on hospice). Although the facility contracts with the providers and lets me know when they are scheduled, I don’t depend on the facility because the providers tend to be unpredictable and no one from his place is present at the visits, they basically just let them in which is why I’m always there.

The answer is 100% yes you want to be informed of all appointments. Make it clear with both the facility and the providers that you are the POA, make sure they all have copies of all paperwork, and make clear you want to be informed when visits occur. Although they are a blessing for the most part, I’ve seen a few things that have raised my eyebrows so I have no doubt that if they saw an opportunity to sell your mother glasses and hearing aids, they would take it. My advice would be to be in direct contact with the providers and be at the appointments if possible.

I would be calling every provider and letting them know I will not be paying for services or items sold to my mother who has stage 4 dementia without her POA’s consent and expect they would have little argument.

Regardless of your mom’s outward presentation, managing appointments and purchasing personal care items is outside the scope of her capabilities. You are in charge whether mom and the facility like it or not.

SusanB-dil

Totally agree - you are not out of line at all. She is not capable of making these decisions, so why are they asking her? It may be nice that they are 'checking' with her, but ultimately, they should be 'confirming' with you.

H1235

https://alzconnected.org/discussion/comment/279151#Comment_279151

Thanks for your support. Mom is on medicaid and I think that is part of the problem. They see this as an opportunity to fleece Medicaid for whatever they can. So its good the cost of these items isn’t coming out of moms pocket, but there is still the issue of does she need these things and is she making a good choice. Is it what is best for her or just a way for the company to make a sale. I have absolutely no idea when any of these appointments are. No one has ever contacted to inform me she would be seeing a doctor. I’m thinking I might call the third party that comes in for all these extras an see if they understand she is not capable of making her own decisions. The nursing home person I talked with seemed to think it was absolutely crazy to expect them to call whenever she is being seen.

April23

https://alzconnected.org/discussion/comment/279154#Comment_279154

If it’s possible to bypass the facility altogether and be in direct contact with the providers that’s what I would do. I can’t imagine how anyone could possibly argue with this. And yes sadly I’ve seen even in-person providers bill his Medicare unscrupulously, it’s a thing unfortunately.

H1235

https://alzconnected.org/discussion/comment/279152#Comment_279152

Yes, that is exactly it. Mom can still be very with it much of the time, but still not all the time. So including her is sometimes good. Most of these things I would have agreed to. PT is good, she will never wear the glasses but if she thinks she will why not, if she needs dental work I want that done. I just want to be included, consult, involved.

lilacgirl

You are not out of line at all. My mom is in AL, and they run EVERY medical decision through me— and I accompany her to all in-house medical appointments. I'm surprised a nursing home would not do this.