I don’t want to know

jenlynn

I am 35 years old, last year my dad who was taking care of my mom with dementia passed away from alcoholism. I had to decline my acceptance in dental hygiene school, I had to quit my job to care for my mom. I moved her in with me and took care of her for almost 2 years. March of last year I found a home for her to live in about an hour away from me. Her dementia has progressed dramatically. She had a UTI and hasn’t seemed to go back to her baseline behavior. She is very agitated and somewhat aggressive. The home is calling me saying she is disturbing the other residents. I was able to get ahold of her new neurologist who prescribed her an antipsychotic, and he wanted her to wing off her original antipsychotic medication. I visited her shortly after and she was obviously overmedicated. The home did not receive the instructions on how to get off the original medication so they were giving her both doses of meds. I finally got it straightened out after many phone calls and emails. But I was terrified to follow up. Every time I think about how she was being overmedicated -for about 5 days- makes me feel so sick, that she is my responsibility and I need to follow up with everything. I get the feeling that I just don’t want to know. It seems easier to ignore than to advocate and fight for what needs to be done. This is the first time feeling like I have failed in being responsible. I have always been strong have even gotten into arguments with medical offices to defend her. And I still will do anything for her. After this though I’m scared to see what she is like now with her new medications, i just feel exhausted and I don’t want to know. Is this normal?

JDancer

I'm so sorry you have to deal with all this. It's certainly seems "normal" to be overwhelmed with it all, especially at your age. Do you have any family- siblings, aunts, uncles- that can help? Asking for help can be difficult, but it sounds like you need assistance. If family or friends aren't an option, perhaps speaking to an alz.org consultant or looking for local organisations might help.

darcytg

Terrifying to be in that situation.

I'm curious how to implement better communication with the staff and doctor's instructions.

Is it common for people who love a PWD in a facilty to have to oversee medications?

Hang in there.

jenlynn

https://alzconnected.org/discussion/comment/194529#Comment_194529

Thank you! Good idea, I will reach out some more to AlZ consultants.

jenlynn

I do need to figure out how to communicate with her home better. If I had better communication that would make a huge difference for my anxiety. Thank you!

Anonymousjpl123

@jenlynn theres a weird thing that happens to caregivers of people with dementia: guilt. I’m not sure why it’s so intense, but so many of us seem to feel we are failing at caring for our loved ones appropriately. You are doing everything right. The facility screwed up. And while it’s horrible that they didn’t appropriately wean her off the one sedative while switching to the other, it hopefully won’t be the norm. I think you need to keep communicating with the staff, but also go gently on yourself. It’s so easy to get overwhelmed, but you are doing right by her. Just keep showing up as best you can, for you first and then her. Hope she settles down and both of you find some relief soon.