New Here - Hypoxic Dementia

semmie

Hello all.

My mom has been dealing with some memory loss for about 9 years now. It accelerated in 2017/2018 when she developed a bad MSSA infection that went undiagnosed for 8 weeks. This was complicated by acute kidney failure from dehydration and pain meds. Her recovery was slow, and her memory never fully returned. Then in 2021, our household contracted Covid, and she developed a Covid PE, which hospitalized her for almost a week. At her follow-up after discharge, her PCP administered the short memory test and she scored 16. One month later, the PCP re-administered the test and she scored 23.

I finally convinced my mom to see a neurologist in September, and they administered the short test again, with a score of 19. And we finally received an officially “label” or diagnosis: Hypoxic Dementia.

The last 7 months have been a downward spiral. In November, she developed community-acquired pneumonia, and it was well into January before we saw a significant “turn.” We honestly did not expect her to survive the pneumonia, primarily because we just couldn’t keep her hydrated.

I feel like it’s a ridiculous battle to get anyone (family or physicians) to acknowledge that mom is in decline. My husband and I are caring for her full-time, which is difficult, as he is legally blind, I work full-time (thank God for my remote position), and we have a two-year old. My siblings are concerned, but when we ask for help, we get a lot of “I would if I could, but…”

Im struggling with so many things, and I don’t know how to put one foot in front of the other most days. My faith is so important to me, but we can’t even leave my mom to go to worship once a week right now.

I always said I would do everything in my power to keep mom out of assisted living, and I never thought I’d even been considering it. But if my siblings can’t support us, I’m afraid my husband and I won’t be able to maintain this too much longer. We are both already burnt out.

No questions… just… wanted to share my circumstances in a place where I am safe and others maybe understand.

And can I just say - I’ve learned that it doesn’t really matter what “label” we put on memory loss and brain disease. There are only so many treatment options.

LizardJoy

@semmie I think a lot of us promise to keep loved ones out of assisted living before we really understand what we're up against. It's a nice sentiment, but not really practical or possible in so many cases.

I feel really lucky that my mom cared for her parents for years, saw what a toll it took on her life, then made me promise not to be her caregiver if she needed full time care. She's in assisted living now. It's still hard as hell but much more manageable.

Emily 123

These are different times, and very often it's a stretch to keep up with the demands of a family and job along with being a caregiver. There's nothing wrong with finding an assisted living facility when the caregiving becomes overwhelming. Why not start looking around or asking friends or pastor about places that have a good reputation?

Ed1937

Everyone should have AL or MC already vetted before they are needed. Waiting for a crisis to happen means you are stuck with taking what you can get, and that will probably not be the same as your first choice if having it done earlier. If your siblings are concerned, ask them to visit a few facilities, and ask questions that need answers.

jfkoc

You are so right. Labels do not matter much except for meds.

Do get legal and financial mattters taken care of and get your Plan B in place.

When you find that one foot in front of the other is too hard give yourself a break. EVen a small one will help.