Good god, where do we even start. My dad has had faltering health all year. We’ve been in and out of the ER numerous times since January, fighting the symptoms of what ultimately ended up being untreatable heart failure. He stopped feeling well in early August and went into the ER/hospital for 10 days before dying. He died of an unknown cancer. Very disturbing.
My mom was staying with him at the hospital but by the third night she was deeply off the rails and the night-nurse told me she can’t stay any longer, has to be attended at all times. Her memory has been slipping for a long while but I was not allowed to intervene because my dad was 100% with-it mentally and could keep her on track. They were even driving places alone right up til the end.
Her mom died of Alzheimer’s. Her siblings are estranged DUE TO the family schizsm that occurred over disagreements in how to manage their ALZ mom. Their half wanted her in a memory care unit. My mom’s faction wanted to keep her at home with her. Turns out, my mom’s only surviving sister came to my dad’s funeral the other day. When I told my aunt that my mom’s ALZ is so bad she can’t keep it straight MY dad died, not HER dad…well…my Aunt was like “yeah everyone has it. The whole family. Everyone but me and one sister” (there were 7 siblings). I would have otherwise never known this!
So my mom is in the middle of this Alzheimer’s diagnosis. Her neurologist thinks she’s in a late stage. She can’t remember she can’t remember, so she’s hostile and thinks no one tells her anything.
So what happened was the 3rd night at the hospital, my dad was unable to speak or communicate well, and was grouchy and confused and would bark at her. And it hurt her feelings but worse CONFUSED her because he was barking indecipherable orders at her while she was in an environment she didn’t comprehend, and she went into a delirium. The night-nurse called me to bring her Aricept, which we had left at home. I was at the hospital waiting in the hall to talk to him when my mom came running out of the room into the hall crying and yelling my name.
I WAS NOT SUPPOSED TO BE THERE, and she had NO IDEA I WOULD be there. She was in her delirium, and was hallucinating about some “evil man” who kept coming into the kitchen–that she was in her kitchen at home and ran out of the house into the alley because of the evil man and kept demanding someone else back her up about that evil man.
She was saying she needed the chaplain to come pray, that the devil had taken over her brain and was controlling her voice. I got her in the room and in a chair and dimmed the lights and calmed her down and what had happened was my dad barked he needed the “urinal” because he was having some weird sensations related to his catheter. He was sounding like 'I NEED MY JOURNAL" due to his marble mouth (super cogent sidebar: they said he died of a “plasma cell neoplasm” which I guess is a blood cancer? Enlarged tongue is a symptom).
So I get her calm and explained she hasn’t been home in days, that it was the third night in the hospital and she was there with dad who was too sick to talk. She was dumbfounded. Earlier in the day, she was having visual “auras” and tracking things in the air and asking if I could see them. It was troubling but I chalked it up to the stress of the situation.
Long story short, they would not allow her to stay there anymore because she was too much of a liability. I had to run her through the ER to make sure it wasn’t a stroke (both her PCP and neurologist said we should…it took 12 hours…) and she was diagnosed with sundowning and delirium. It’s not the first (or last) delirium episode.
She has since then been living with me. Dad died and we finally had the ceremony a few days ago. Now that I have the mental bandwidth, I am going to have to figure out what to do with my mom.
SHE IS A MAJOR PROBLEM THAT REQUIRES A DELICATE SOLUTION.
I am both her Durable and Healthcare PoA. This is by assignment by documents a few nights before my dad died–both he and her signed–but also by probate as dictated in his will. She is my responsibility.
So she has been living with me and my fiancée since the night she freaked out, through the death, and now the funeral. This is untenable. The problems are:
- She’s intractable. She cannot keep any information straight. She cannot keep it straight her husband has died. She thinks it’s her dad. She keeps marveling at how she “inherited it all. None of my sisters (all but one are dead) got ANYTHING!” I have to remind her daily anew it’s my dad, not hers, and where we are and what we have to do.
I KNOW that you’re not supposed to do that, more on that topic soon.
- She is desperate to stay at their house alone. Totally cannot happen. She cannot be alone for even an hour, and I myself cannot possibly keep up with her, not even if I made being her caretaker my full time job. She goes off the rails every night, she has to be doped up to sleep because she will leave the house after a nightmare. She cannot be alone. She spirals inward into her brain when she can’t find an answer to her questions and there’s NOTHING in there but plaque between her neurons and she can’t find any answers and she just spirals into a hysteria.
I would LOVE for there to be a solution where she gets to stay there–maybe a dayshift nightshift thing, but she literally can’t remember who anyone is so she’d be aghast at different strangers in her home. Especially w the sundowning.
- Her doctor is fucking dogshit. He failed to find a terminal-stage cancer in my dad who is out $136k just this year in medical bills BEFORE the 10 day hospital death which the bill hasn’t come yet…fuck that guy. He’s my mom’s PCP and has handwaved me away to her neurologist.
Her next step is a full cognative assement which is not to happen until October. Know what else happens in Oct? I am supposed to get married.
Already cancelled the honeymoon because **gestures broadly…
I HAVE to figure out a mental health facility to take her into good care. She needs help. I don’t know where to start. I don’t know what their insurance is or covers. I don’t know how much money they have coming in per month. I don’t have any idea how to start moving forward, I know it’s one bite of the giant elephant at a time, but I have to start TOMORROW. In 12 hours.
I need ADVICE.
Why are we supposed to gaslight ALZ people?? Why are we supposed to lie to them and tell them nothing’s wrong, that OH NO you did not forget, I forgot! Why?
My mom has low self-esteem. And she’s easily spooked. She’s a subservient Christian women who will back down if you say “LISTEN, WOMAN.” She requires THE SOFTEST touch.
Through all of this, she keeps grappling for ways to blame herself–it’s her fault he died, she missed something. She spent too much time upstairs working on crafts. She didn’t pay enough attention. That’s why her memory is bad–she didn’t spend enough time talking to other people.
I THINK THAT IS PARTIALLY TRUE. My mom is two things: she’s a mega extrovert and a mega craft fiend. I think a memory care unit would be ideal because she can have some of her furniture and junk from home, she could have a desk to work on crafts, plus she would have all-day socializing with other ALZ patients and no one would ever get tired of each other. And we could spend weekends and holidays at her home, and I could be the memory care casanova. That is ideal. Me and my little white dog would come tickle all their funnybones.
Do these things cost out of pocket every time?
Does Aetna or Medicare cover anything?
Do I hold off on having her assessed until I get some legal remedies in place (I worry about her medically declared state of incapacitation to cause some problems, but then again I am her HC and Durable PoA in two directions, so maybe not).
I have other questions but I’m firing this off.