My Mom will be 79 in August. She has always had mental illness and has been taking medications to help with her psychosis and depression. My Dad passed in 2020 and, although she was difficult before his death, I've had a front-row seat to her (sometimes) terrible behavior since his death.Lately she has begun hearing voices again. She has fallen a bit more in recent months as well. She thinks the neighbors are talking to her, when there is no one there - this morning I caught her on her Ring camera walking to the neighbor's home and looking into their camper and around their home. And when she fell yesterday she would not let my brother (he lives with her) take her back to her bedroom as she said there were a lot of people in there. He had to take her to the sofa to lay down. She has also taken to sitting alone - no tv, no music or reading, just sitting and looking straight ahead. Sometimes she'll have an imaginary conversation - sometimes nothing. It's concerning. She does sometimes get aggressive and violent - she has hit my brother in the head while he was driving her to lunch - they were arguing. those times are rare but still alarming. She does still have her car keys right now as there was a time that she would stay withing a 2-3 mile radius of her home to do little shopping trips to nearby shops. But now she is venturing out further and sometimes gets lost - we track her on the Life360. Her keys will probably be taken soon.The most concerning (on this day anyway) is her bouts of quiet sitting. Has anyone else experienced this? Could it be nothing and I am just overreacting? She is home alone for most of the work week - both my brother and I work. I suspect that some of it is loneliness. Her remaining sister cut her off years ago due to her erratic behavior and her brother lives far away and doesn't speak with her much. On some days she'll say they are in the living room with her and that they are dead and their spirits are talking to her. But some of the quiet sitting feels degenerative. I would love to get someone to come sit with her a few days a week - but that is costly and she hasn't been formerly diagnosed with anything - so I'm sure her insurance isn't going to cover any of that. Her PCP gave her the basic cognitive tests because dementia does run in her family. She did fine with those. And she acts reasonably normal at her doctor's visits. In the recent past they have also taken x-rays of her head and didn't notice any signs of stroke or dementia that they could see. I know I'm all over the place here, for that I'm sorry. Does anyone have suggestions about the quiet sitting and/or how/if one can get home care a couple of days a week that won't break the bank?I'd love to hear your ideas, opinions or suggestions on any of this. I'm so appreciative of this platform and the people on it! Thank you!
You and your brother sound very caring. My uncle had schizophrenia and my brother and sister both had/have bipolar.
1. Consider having your brother pull the battery from the car. If she tries to use the car tell her it is broken down or just tell her up front the car is broken down. That may work better than taking the keys away.
2. Consider checking out any adult day care run by the county. If the staff allows you to do so, take a day off of work and stay with her there for the day.
Tell her you are going to the senior center and will be doing artwork and crossword puzzles and it is something you want to attend.
If you can get her there it would stimulate her.
3. Caregivers if you go through an agency will have a 3 or 4 hour minimum.
In my area there is one agency that will send someone for 3 hour minimum.
Agencies like regular schedules. i.e. You could tell them you want someone on Wednesdays from 10-1 every Wednesday to play games with Mom.
Give explicit directions on what you want the caregivers to do: crosswords, games, cards, puzzles, coloring, water colors, lunch etc. Cost through an agency in Maryand (rural) is now running $32 per hour. It is easier to get someone for a few hours from 8:30 - 1:30 as the agencies have a lot of Moms with young children that look for sidework.
PS. If you hire through an agency don't "over share." Tell the RN you are looking for someone to play games and talk with Mom for 3 hours and maybe fix a meal.
4. The "sitting blankly" for hours may simply be disease progression. Sadly when you tour care facilities there are a lot of seniors citizens "sitting blankly." You can google the stats on life spans of those with bipolar or schizophrenia. Your Mom is 78. Those with mental illness statistically live 12-15 years younger than those without mental illness. Given how much I've been subjected to by my family members in terms of rage,mania, psychosis I think I would not see sitting blankly as a bad thing.
5. NAMI can offer you supports. (I've not used them.)
6. Some of my biggest regrets in life has been not calling 911 during extreme periods of psychosis/mania and rage of family members.
7. It sounds like Mom presents well and interacts well with doctors at her doctor appointments and it sounds like you've done extensive testing.
I think you will need to speak up at Mom's appointments and tell her doctors what you are seeing so the doctor can consider a med change. My understanding is sometimes psych meds have to be adjusted with aging.
I don't know what additional scans and testing would achieve? It sounds like Mom has a lifetime of mental health issues and her meds may simply need to be adjusted.
8. You may want to retest for a UTI. We used hats in the toilet. We picked up the lab cups at the PCP. We collected the urine sample in the hats. I dropped the filled lab cups off at the PCP. This way Mom never had to leave her house. Even if she tested negative 30 days ago she could still have a UTI now.
Best wishes to you.
I'm concerned because I know that increased cortisol (a stress and inflammatory hormone) has been linked to dementia. I will have had prolonged increased cortisol levels due to chronic depressive disorder, anxiety disorder and stress.
Most mental health issues come with a side order of anxiety and stress. Plus there may be other resultant problems linked to mental illness that affect the health of the brain.
Please get your mum checked again. If possible (I know that more tests mean more bills in the US) try and get your mum an MRI, or other suitable scan, rather than an x-ray. X-rays are cheaper but they don't show fine details of soft tissue damage as well as other types of scan.
Wishing you all the best.
I'm going to try to get her evaluated again. It's just getting her to agree to go. She knows what the neurologist is evaluating and she refuses to go.
Thank you so much for your advice!
Has a urinalysis been run?
Clearly this is now a medical emergency. You can ASSUME this is her mental illness, but that may be a wrong guess. The time for "guessing about this" is over.
I would call EMS now for transport to the hospital.
She is 79. It is up to you. Eventually this will "come to a head" and you will have to address it, or there could be some disaster that could lead to her demise. Given the current quality of her life, her age, her likely prognosis I think you and family have a lot to weigh here in terms of how to proceed.
For the average person this would sound like an unimaginable disaster. To anyone in medical, or even very long on the AgingCare site, this doesn't even raise a lot of eyebrows; I am so incredibly sorry you are ALL going through this.
Please tell me you have read the memoir by Liz Scheier titled Never Simple. She tried, along with the entire city of New York and the state as well in terms of Social Services, to intervene to care for and protect her mentally challenged mom. It never worked. It usually doesn't. Not everything can be fixed in this world. My heart goes out to you.
Her PCP says nothing. They do a simple 5 minute test and she passes. I got her to a neurologist once and they did nothing - told me that the first trip was a "getting to know you" type visit. Ticked me off... and I haven't been able to get Mom to go back again. I called the neurologist a few months ago and she said that, unless I can get her there for evaluation, there is nothing she can do.
She has always had mental issues - but my Dad insulated us from just how bad it was/is. It's bad.
Yesterday's incident is over - but I know that another is not far behind. I'll have to call someone for help, I'm sure - probably EMS. It just breaks my heart. But this is getting bigger than my brother and I can control.
Thank you again, AlvaDeer - I ready your responses to others often and value your input.
I have not read Never Simple. I'll look for it now.
And if she is content to sit quietly why does that bother you so? I would just be grateful that she's not going off on a tangent.
And who knows she may actually just be watching the other invisible to you people that are occupying her house.
They do have Adult Daycare Centers in most cities that you could take her to a couple days week. I know the one in my city charges $55/day and they provide breakfast, lunch and a snack, and have all kinds of activities to keep the folks as busy as they want to be. And you can have her there up to 8 hours a day.
And if money is an issue they do offer financial assistance. Plus if your mom is a veteran, the VA helps pay for it as well.
And just FYI...an X-ray typically won't show any signs of dementia or stroke, so you may have to request that a MRI or CAT scan be done to rule out these things if you're concerned.
Yes, she was checked for a UTI a month or so ago. There is no UTI.
Mom sitting quietly is completely out of character for her. That is why it is concerning for me. She loves music - and she'll usually listen to that if nothing else. Just sitting and staring into space is not something she does. Although, you may be right. She may be listening to the other "people" in the room.
A couple of things about her that make this tricky... 1. she craves attention. Always has. She's very needy. My Dad gave her that attention constantly - I don't know how he did it. It's exhausting. 2. She has always tried to convince me she's clairvoyant, which is why I think she performs her imaginary conversations in front of the Ring camera. But for the past 6 months or so it's felt very different - very disconnected from reality.
So I'm always asking myself, is she doing all of this for attention? Is this another stunt? But I really don't think so this time. And if it is an act, I'm over it.
I'd love to take her to a daycare for the day. But getting her there would be an ordeal. She refuses to be a part of anything resembling assisted living.
I think it might have been an MRI that she had - apologies that I wasn't more detailed about that. She's had 2 different imaging scans done on her head. Neither produced anything that her doctor found alarming.
My Mom is not a vet. She was a homemaker her entire life.
Thank you so much for the feedback!
Take them car keys away for sure because she could hurt herself or someone else. Tell her the car is broken or move it and say it is in the shop.
Know that a prayer has been said for you and your situation as I finish this. ((hugs))
I'm going to take the keys. I'm just preparing for the fight that will come. She has a lot of fight in her.
Thank you for the prayers & hugs! And for the advice!!