I'm sure mom wishes she had not asked me to take care of things

wellok

 Hi, my mom was diagnosed about 3 years ago with parkinsons and  now it is lewy body and vascular dementia, with doctor notes she should be in memory care. I have POA and am told daily "I don't have anything" and I am made to feel I am a bully for making her stay where she is. She is in skilled nursing awaiting the extremley long list for a waiver program for a slot in I was hoping, assisted living, but that is now memory care. So the skilled nursing is telling me she is very alert and why can't I move her to assisted living. But I now have several doctors saying memory care only. What will that be? I can't mention the type of home to my mom she is livid hearing "memory care".

She ended up in this place from a hospital, and they keep telling me she can go to assisted living since they "have  no doctors notes of their own that she was diagnosed with memory issues" and I constantly tell them, I have the records right here in front of me. And they didn't fax the neuruologist for the reports. So, I am not moving her until it is memory care and they can just sit on it.

I am just not anyones favorite and also feel guilty I have to be this toe to the line person not budging person.

 Now, daily I am asked about the money in the bank, how can she get it, where is it going. I found myself not replying to her questions, it is easier now. Otherwise it turns on a dime to "there is nothing wrong with me" "it's too bad I can't come home to my home" "I fell and I never got to come home" "why can't I come home" "my roommate is going home she is older than me"

She is focused on the money now, all the time, besides all the why can't I go etc comments.

I try to talk to her before afternoon, but it is the same questions. I realize she will repeat these to me, but it is really making me feel like the worst daughter in the entire world.

So, just a few minutes ago she called and told me she talked to someone in charge where she is at skilled nursing and "they said I can stay here I don't have to move" which is news to me, they said with what she has she can't stay there. And anyway, she can't make decisions so why are they telling her this?

The whole thing is horrible, she seems so normal like before a lot of the time, and the guilt I feel is quite a lot. There is no way I would be able to care for her. I am getting no help from anyone, they are fine being out of it.

I feel like I am constantly worrying about this. And am sure she wishes when she is lucid she had not chosen me to do this. As, what I will do is follow the doctors advise, which is memory care and I won't be bullied into moving her to skilled nursing when she needs something else. So, the place she is at is not fond of me, at all. But I am not doing this for them, I am doing this for my mom.

abc123

Please try to remember your mother has brain damage. You can not believe most of what she tells you. I realize how difficult this is but her brain is broken. You are a good daughter, doing a good job. You can’t second guess yourself. I wish you well.

btwise823

Wow. Ive just joined alzconected and read your post. My mom is still living with me and siblings (we say she is going to visit the other family members every now and then). Is there a key point of contact at where your mom is now?

M1

Welcome to the forum.  My understanding is that one of the characteristics of lewy body dementia is wide fluctuation in level of alertness, so that probably explains part of what you're seeing. Not that that helps, from a practical standpoint. You're doing the right thing to just sit tight. She may well be confabulating what staff there told her so I would take that with a huge grain of salt and not hold it against anybody. Keep us posted-

Stuck in the middle

Sounds like she chose the right person.  You are not yielding to manipulation from her or from the SNF.  Good job!

mommyandme (m&m)

I think she picked the best person to advocate and care for her. She raised a Rockstar!

So sorry for all the heartache!

Fad marie

wellok, we often have to be our own advocate when it comes to health care, and it sounds like you're doing a great job advocating for your mom's needs.  Continue to be the not-budging person.  

It was "funny" to read you write about how much your mom asks about money.  My mom constantly asks about money and, of course, we no longer give her cash because she was giving chunks away to people with no explanation (e.g., she gave my sister $100 just because).  So I just lie or deflect when she asks me for cash.  It is taxing to keep lying or deflecting.  I feel bad because it feels condescending to keep lying, but I know she cannot manage money and it's the right thing to deflect.  

Emily 123

Wellock,

The second guessing yourself and trying to get the PWD to sign off on your choices really stinks.  You're doing great!

As ridiculous as it is, you will have to facilitate getting the medical records with the documentation you need into the chart at the nursing facility.  What happens at discharge from a hospital is that the discharge (DC) summary from the primary physician gets sent along with a packet of orders and a medication list.  The specialist's note (like Neurology's) don't always get pulled into the DC note, or may not mention long-term recommendations past getting the patient to the nursing facility. You can do several things, depending on what the nursing facility will accept.  

1. Talk with the medical director at your mom's facility and set up a way for them to add copies of the documents you have to your mom's chart. Then get the documents to them (either scan and email copies or physically take copies to them) or

2. Have the Neuro's office send the records to the facility.  The office may ask if you have the authority to make the request.  They may need the facility to request the documents-either way, that's ok.  It's a HIPAA thing.  

It might be best to ask the Neurologist to create a new note to clarify that your mom needs memory care-that way you have a current recommendation.  If that's not doable then you will need to specify to the office what note(s) you want them to send-your copies should have a date they were created on them, so identify them by that. You will need to request that both the doctor's office and facility confirm that they were sent/received. Good luck! 

Tauruslady511

I could have written this verbatim. When I was able to care for my mom and very early on, when she moved into the facility, I got lots of questions about the money. Then it was why does she have to stay there.  She is in an assisted living facility that acts as a nursing home.  I agree, you have to keep in mind your mom’s brain fiction is no longer “normal”.  It’s easier said than done, but you really have to take most of what they say with a grain of salt.  

I’ll tell you that this is not an easy position to be in, but you’re doing what needs to be done. It really does need to be someone who will advocate on the patient’s behalf and not let these facilities BS with patient care.