In person support group for mom

Mona D

Hello! Mom has been struggling with "age-related dementia" (malarkey) for a few years. Been working on diagnosis for almost a year. Finally have PET scan diagnosis- Moderate AD. My mil passed w AD so I know what's coming. But I didn't expect it to happen so abruptly.

Mom lives with me most of the time. Goes to stay with sister for a few days every other month or so. This a change as of about 3 months ago. My sister used to have her majority of time.

Mom will tell sister something that just didn't happen. Like - my family and I are always making fun of her or always telling her what to do. Absolutely not true.

Mom's perception is her reality.

My sister and I have each other to vent to. Mom is typically a very positive, happy-go-lucky person. But she's started crying - out of nowhere. I ask her what's wrong- how can I help. She says she doesn't know. Maybe she just can't communicate it.

Long story for my question. Has anyone had success with in-person, patient support groups? I've added mom to a few FB groups but her ability to navigate social media is pretty much done. Mom is aware of her diagnosis. Understands it. Maybe SHE will feel more understood with people who are going through the same thing. Or maybe someone will say something that hits home for her.

We're in Amarillo/Canyon TX.

Thanks for listening!

SusanB-dil

Your mom may have what is called Pseudobulbar Affect, or PBA. (note - I am NOT a doctor, but I have seen this syndrome)

The dictionary definition is: PBA characterized by sudden, inappropriate, and uncontrollable episodes of laughter or crying that are not related to the person's current mood or situation; this can occur due to damage in the brain areas that regulate emotions, commonly seen in people with dementia or other neurological conditions. They may laugh during a sad situation or cry when there's no apparent reason, and are not intentional and often cannot be controlled by the person experiencing the episode.

Tell her doctor. There are medications for this.

Glad you and sis are on the same page. My brother and I are for my mom, but a lot of folks have a different situation. My mom does not have anosogosia, either, and knows her diagnosis. MIL is oblivious.

Emily 123

Hi there,

It may be that a support group can work well for early stages, but I think if she's in the moderate stage she might find it challenging. If she's struggling to articulate it to you then it might not be helpful. And would she recall enough for any benefit?

Do you think it might help her to stop discussing the disease with her for a week and see what happens? Her ability to process information and emotions is changing, and reminders about this grim disease may be too much for her. She may sense her losses, but struggle to define them, and may feel scared or sad, or overwhelmed. I'd discuss with her PCP if an anti-depressant might help as well.

It also may be that the moves (even though they are between known environments) are difficult for her. A move from one place to another is disruptive to the person with dementia because they rely on routine to figure out their day. With a compromised memory they may need weeks to months to adjust to a move from one living place to another, and if you're moving her back and forth it may be disorienting to her. When disoriented, your person will spend a lot of their mental energy on trying to adapt, and may seem more confused than usual, especially as the day winds down.

Too, with the disease reducing what information she can recall, she'll grab whatever emotion or memory she can use to make sense out of the current situation. That might be where the stories are coming from—maybe she's picking up on your having to help her around your home more than she'd like. My mom was that way and it was a fine line that changed from hour to hour as to how much help she needed. Sounds like you already know to let it roll off your back 🙂.

SusanB-dil

Wonder if a local adult day-care would keep her engaged a bit? Just a thought…