Need some advice please(2)

StevenV

Hi, I'm Steven and this is my first post here. I am looking for some recommendations for me to help better care for my mom.

She is 68, lives about 3 hours away from me with her partner in Bloomington Illinois. Her two sisters also live in the same town as her but are pretty quick to run out of patience. I call every day and visit once a month and help with her medical care. We have a POA setup now. She is experiencing some pretty severe anxiety and depression coupled with her memory loss and dementia. She is usually in tears when I call. Recently this has started to turn into more anger which is understandable but makes the whole thing worse.

We've been working with a general psychiatric nurse practitioner and have been making some adjustments to her medications that were previously prescribed by PCP. She was taking

1. 30mg lexapro
2. 60mg buspar
3. 1.5mg clonazepam

I don't like the clonazepam here as I expect it makes memory issues worse but the anxiety is so overwhelming for her I don't know what else to do. Over the last two months we've stopped lexapro entirely replacing it with 10mg of trintrillix and now have started to reduce buspar as it doesn't seem to be helping either. She continues to do worse and I'm not sure if this is a progression of her dementia or a negative response to medication changes. This morning she was convinced that she needs to stop trintrillix that was started with 5gm 6 weeks ago and last week was upped to 10mg but she doesn't remember when she started. Pills seem to be a focus area for what is wrong.

Anyway, I think we might be out of the skill set for our nurse practitioner and feel like the medical staff we've see so far doesn't really understand or know how to help. I'm trying to learn as much as I can about these conditions to at least start asking the right questions of medical professions and have picked up the book the 36-hour day. Does anyone have any other recommendations for books / resources?

I was able to get a telehealth appointment for her with a doctor out of northwestern who specializes in Alzheimers and memory issues and he offered to do a PET scan and spinal tap to make a diagnosis. But he wasn't wanting to meddle with medications and was predictably focused on memory issues over the emotional issues involved. I feel like a geriatric psychiatrist might have better answer here but there aren't any in her area and even getting into a NP was a 4 month wait. 

Therapy is an option but I don't know how something like CBT would work with someone that won't remember what you learn from therapy? 

Thanks for any words of wisdom you have to offer.

star26

Hi Steven, welcome. 

Because of what the telehealth doctor said, I am wondering if she has received a comprehensive and reliable dementia diagnosis? What kind of doctors did she see for the diagnosis? Do you know what stage she is at now? Here’s a link to give you an idea of what the diagnostic process should look like: 

https://www.alz.org/alzheimers-dementia/diagnosis/medical_tests

In addition to making sure you have a proper diagnosis, I agree that you need a geriatric psychiatrist that specializes in dementia (an MD) to treat the anxiety, depression, anger and any other behavioral issues that arise as the disease progresses. This is important enough that I would get creative and put a lot of effort into finding such a specialist (as you did with the Northwestern doc.). CBT or other talk therapy is not appropriate treatment for a person with dementia experiencing these symptoms. 

Is someone else managing her medications for her or at least providing 100% supervision and oversight? If not, I’d put this in place immediately. I would also try to phase out too much discussion with her about medications since she is starting to blame her problems on the pills. You could end up with a situation where she refuses to take any medications.   

Others will likely respond here with more info and suggestions, so keep checking back.  

M1

Hi Steven and welcome.  I agree with the above, you need geri psych above the level of a NP.  She might benefit more from atypical antipsychotics at this point, Seroquel being a common one.  IDK that PET/MRI or spinal tap will help you all that much from a practical standpoint but it depends on what workup has been previously.  It might be possible to get telemedicine appointment rather than in-person?  Or if you're diplomatic about it, you might ask the NP you have if you can arrange a consult with her supervising physician.  The central issue for any medical practitioner (and I am one) is to know what you don't know and when to ask for help.  Hopefully she might be receptive to that.

Good luck, this is not easy and long distance makes it much harder.

Azadi

serequel was the best medicine that worked for my mom. I combined it with magnesium twice a day to keep her calm.