New Caregiver - Venting

AddyJ89

Hi. I've just recently become caregiver for my mom (62yo). She does not formally have a diagnosis but the doctors she has seen suspect some form of dementia, likely frontotemporal, though they cannot tell which for sure. She has some issues with memory but her most prominent symptoms are word salad (forgetting the word/saying the wrong word) and delusions (she is hallucinating a man she says is her fiancé/husband but she is not married, nor has she met this man in person. She talks like he just stepped out of the room though, which makes me think she's hallucinating him).

Her symptoms have worsened over the last year, starting first with the word salad and then snowballing into delusions and wandering at all hours of the day/night. I am doing my best to keep her safe but I feel like I am drowning and won't ever be able to keep her truly safe.

I have health issues of my own, including cancer (which is not severe and currently being treated), but she has no other children, no husband, and her two sisters are unreliable so I have to be her caregiver. I understand there are professional caregivers but I don't know what that would look like having to go through to get her the care she needs. I don't have a car to get her to appointments or even to the grocery store (thankful for grocery delivery!). I am having to rely on family members for transportation as I can barely make ends meet now that I am covering her bills as well. I don't know how to help her while also keeping myself afloat.

I know we are in the transitional period. This is all very new and things are changing very quickly. The word salad has been there for over a year but the delusions and wandering have shown up in the last just over a month or so. It feels like her symptoms are spiraling out of control and I don't know how to stop them. I don't know what to do.

mabelgirl

Being someone’s caregiver doesn’t have to mean hands on. It sounds like you really should consider if a facility setting is better plan for both of you, if it’s affordable. However I think the first step would be to get a doctors diagnosis, especially since mother is not 65 yet, she’ll most likely need a disability diagnosis to get financial or long term care assistance. You might want to talk your social service agency for disabled people or try elder affairs.

Prayers for strength for you.

Jeanne C.

I'm sorry you and your mom are dealing with this. May I also suggest seeing a certified elder law attorney (CELA)? They would be an expert in your state's longterm care Medicaid program and should be able to help you get benefits for her as well as setting up documents you need, like POA. In home care is expensive. Facility care is very expensive. It can't hurt to see what your options are.

AddyJ89

https://alzconnected.org/discussion/comment/217780#Comment_217780

So she was in the hospital for about 2.5 weeks while we were getting her a bed at a long-term care facility and the hospital was able to apply her for medicaid. She was approved within 3 days, thankfully. However, the facility only kept her 4 days because they claimed she was competent and wanted to go home, despite there being a declaration of incapable of making her own decisions. I didn't have any more fight left in me to advocate for her with the facility so I just let her come home. I'm nervous because she wanders, even when I'm sleeping but I'm doing the best I can for her.

Edit: The hospital is also helping me file for guardianship. The case managers at the local hospital have been amazing through this.