Mom is 84 now, living alone out of state. I talk on the phone with her every day. She passes the cognitive testing in the doctors office, but I know she has dementia with up to 4 delusions currently. Because the doctor hasn’t deemed her mentally incompetent, she is of her own accord. She seems fine half the time, then one of the delusions enters the conversation. Here’s the list:
1. Her teeth are rotten in the front and she needs them fixed. I spent hundreds of dollars on dental insurance for her because I thought she needed a lot of work. Nope, not one cavity. Dentist says she looks good. There’s discoloration between the teeth, but not cavity. She wants to go to another dentist 😩.
2. From the past going on for years, bugs in the carpet, going on her, going in her body. Multiple pest control coming, finding nothing, charging fees. She bothers the management as well of this issue.
3. Paranoid delusion, the man next door is on her iPhone, he listens, he changes things on it, and is a basic scapegoat for everything she can’t do on it.
4. Me, I’m against her, I don’t stick up for her, I don’t believe her. I’m basically her only support.
I would really appreciate any suggestions. I realize there is no medication for this and it stems from dementia that she’s not diagnosed with yet, but I don’t know how to handle this craziness and not fork over more $ on needless situations. Ideas?
I think my mom will outlive me. She’s in great physical health, not mental. So sad it’s like that. For you, I think you’re doing the right thing allowing the facility to take care of her needs. I only wish I could have some peace of mind and get her into one as well.
thanks for sharing
I agree she should be checked for a UTI.
No one can stop you from pouring money into these bizarre claims but yourself; Mom should pay for her own dental visit. If there is assessment of care needs, and you can afford to help, then have the dentist call to discuss. If you can afford pest control check then pay for it if you wish to. Once. And etc. I know you will understand what to do in these instances in future.
I would suggest that you not take on the POA for your mother if you do not intend to live nearby. It would be impossible with someone who is uncooperative to do from out of state. You may wish to call APS for a wellness check. Dependent on what they report back you may be looking at a visit to mom and arrangements for a good neuro psyc eval. If there is a need for guardianship and placement you can decide if you wish to do this, if there are other family members who may, or if your Mom will need to be a ward of the state.
Meanwhile, don't react to these delusions such as dental care. If your mother is still capable of living alone, then she is capable of her own dental appointments.
I sure wish you the best. Eventually, as this progresses it is going to come to a head. I know you are aware of that. The question then is can you/do you wish to be involved in care, assessment, placement, guardianship and etc. I am so sorry. No one chooses this, and you aren't alone.
I have heard about NOT taking POA when you live away from the person, but then who takes over responsibility? Wouldn’t I be better than nothing?
Two options:
1) Find another doctor who will make a more sensible diagnosis of her situation. Then get POA (if you can) and get her into appropriate care to deal with all of this. This will take a visit, probably at least a couple of weeks.
2) Walk away. This situation is very difficult to control, and you don’t seem to be deeply involved emotionally. Let some other authority deal with it.
Work out what YOU are prepared to do, (including paying for delusions). Stop wishing that other people would change – they won’t, and have no incentive to change. You have all our sympathy, whatever choice you make. Just don’t jeopardise your own well being, because your mother’s situation is not able to be solved.
Best wishes, Margaret
I agree on getting another doctor. I just don’t know how to do what’s next.
I was emotionally involved years ago. She lived with me and my family 7-8 years ago when my dad passed, before this dementia started. She stayed 3 years, but hated it. It took a toll on me, and I ended up on medication sadly. I know now, this is what they do, and you have to take care of yourself. So she wanted to go back to AZ, and I sent her. I warned her when she left, I can’t fly out on a whim, she’ll be on her own, etc. It’s only been this year that I started verbally deciphering her deceptions.
Although true, it was hard to read, ‘…your mothers situation is not able to be solved.’ I wonder if that will be me one day.
I agree with Alva, if Mom is living alone, then in theory, she should be able to work to solve her issues herself, right?
Would it be possible to move yourself from her 'Chief Fixer' to more like an 'Interested Bystander'?
Any request for you to call research, arrange etc turn the conversation back to what SHE can do about her issues.
Something like;
1. I hope your teeth are better now. What did your Dentist say? What are you planning to do now?
2. Are you still talking to management about this bug problem?
3. I want you to be safe Mom but I live far away. If you do feel unsafe or in danger from your neighbour, what is your plan?
4. Yes I hear you. I support you. I understand you believe this to be true.
Of course DO be vigilant for dangerous delusions & be ready to get some 'boots on the ground' help for her if needed.
Are these delusions fairly new? Or has Mom always been a little anxious/obesssional?
The bug delusion has been going on for years, the teeth delusion about 1 year, the paranoid one is rather new. It takes me a while to unravel them and see if there’s truth. She’s always been anxious. She seems to like the delusions. She doesn’t want me to fix them, sort of like, a fun drama in anxiety. When you say to be ready in case they get worse, what should I be anticipating, or preparing for? The memory care unit? She thinks that’s a mental institution, and would rather die. I really don’t know what to do miles across the country.
Job #1 is to get an accurate diagnosis. If someone has gone with her but yet she never gets diagnosed, then switch doctors. Also, record or video her while she's saying and acting in paranoid ways so they have other irrefutable evidence to work from.
Next, do not pander/cater to her paranoid whims like the dentist thing. Make up therapeutic fibs as to why you can't take her (and certainly do not pay for anything). You don't have to argue whether what she believes is true, just don't let it control your time.
I would definitely ask about testing for UTI and talk about medications. Is anyone her PoA? Or Medical Representative? If not, then helping her when she's not cooperative will be very difficult. I wish you success in improving the care arrangement and getting answers!
Stop paying for pest control.
Is someone going to the doctor with her?
In many cases family members just have to wait until there is some possibly catastrophic event that puts into motion the help that is needed.
You can begin by holding off on "help" and letting things begin to unravel. A call to APS then might be a start.
There is a good possibility that the management of the building where she lives is not going to be happy with repeated calls about bugs.
Who manages mom's finances?
Is anyone POA for Health or Finances?
Are you listed on your mom's paperwork at the doctor's office that you can get or give information (HIPAA forms) without your name being on that form they can not give you any information and if you contact them they can get info from you but can not comment on it. The important thing is if you are not on the HIPAA forms if mom ends up in the hospital they can not give you any info..if they even contact you.
No one goes to the doctor with her. She’s in great physical health, so she manages her apartment, food, appointments her self. I took over her finances this year and do them online. She barely gets by, hence, why I shell out $ for her. I have MPOA and on HIPPA, so I’m able to discuss with nurses through a patient portal, but to little avail.
When you say, “put into motion”, what does that entail? What is the process and goal, if you will? What would I even say to APS? And what would they do? She would probably never talk to me again if she found out I called APS. Would they take her from her apartment and put her in a nursing home?
What kind of help do you think she needs? I don’t want to make her situation worse. I already feel inadequate…
I lived in a different state from my mom. I was the sole support for her long distance. If I had realized early on that my mom was starting down the road she was on ,the paranoia , the hallucinations etc…I would have insisted she move by me sooner . ( I had tried numerous times) I finally got her in a memory care by me. And she would have been so much happier if she had just moved.
It does not get better from here.
I was an in-home caregiver for 25 years. I've seen every kind of dementia, showtiming, and family dynamic there is.
Do what Grandma is telling you.
In the meantime, DO NOT shell out another cent on your mother's delusional nonsense.
In many cases and I think yours in one of them, things will have to get worse before they can get better.
I once lived next door to a 70-year-old woman, "Faye," who wasn't often at home because she was a caregiver for another elderly woman across town. Suddenly Faye was around more, and she told me that she'd been let go. This made her sad, and she said she was suffering from depression.
Suddenly things started happening - for instance, lipstick marks someone slashed on my white front door. Then the same marks on my car, and they were all the bright fuschia shade that Faye wore. Someone destroyed a neighbor's flowers. Faye called another neighbor and demanded to be rushed to the ER (nothing wrong). She cornered me outside my house and said that she was worried about terrorists taking over a small water pump near the neighborhood pond. This was pre 9/11, and terrorists weren't considered a threat in the US then. Finally Faye's daughter came from another state and took her to a retirement place near her. Some of the other neighbors had told the daughter what was going on. None of us knew what Faye might be capable of next; she was doing aggressive things.
So you might want to cultivate some of your mom's neighbors and gather more info.
she’s not safe and will fall before long and that’s when the opportunity to force change comes in. She won’t be released alone with no support or she’s an unsafe discharge. Start looking now at assisted living places with memory care near you. You’ll have to sell her place to afford it. Don’t spend a dime of your own money.
delusional and demented people can only push their loved ones around because we let them. I spent my life in fear of my mother getting upset … my whole childhood revolved around keeping her happy or else she’d have a migraine. Turns out not my job to keep her happy. Complaining is her native tongue and favorite hobby. The last few years I’m now in a much better place because it’s finally occurred to me that keeping her happy is not my job and her lack of support is a direct result of how she is and how she treats people. she has had one psychosomatic ailment after another my entire life and has used these as weapons to control the behavior of everybody around her. Get upset mom … and call me back when you’re over it.
Wishing you luck.
I do not understand why you feel you need to 'fork over more $ on needless situations?"
NO YOU DO NOT NEED TO DO THAT.
You stop.
Period.
And you do not argue about it.
You need to understand WHY you feel a need to give her money for what you say is 'needless.' Once you know what is running you/r behavior, you can make a rational / needed decision: stop.
If you do find another MD to diagnosis her, become her POA and handle all her legal affairs.
Do not argue with her. It is her changing brain that is acting / re-acting to situations she perceives are real.
Keep a journal of daily / onging changes. Show this to the MD, now.
Provide the list you share here with her current MD.
Gena / Touch Matters
--someone was outside her front door at all hours of night - watching her through the peephole. They would ring the front doorbell at 2am or 3am, and when she opened the door, noone was there. I tried to help her understand there was noone there (she lived in an over 55 gated community with security guards at entry gates), I installed motion sensor lights on the walkway to the front door - but nothing helped. (One night she was so frightened that she banged on the interior wall to the neighbor with her walker because she was afraid to use the phone). She even baraicaded the front door with chairs, slowing down 911 responders. And I can't tell you HOW many times she called the police who showed up - 'Frequent caller' - Then
--this delusion turned into someone trying to climb up to her 3rd floor balcony and break in so she had buckets of water sitting all over the balcony (so they would step in it and then fall) In addition
--she was convinced that the people on the tv were watching her (she was watching news stations 12 hours a day) even when the tv was off - listening to her, watching her, seeing her. And
--that there was someone living in the attic above her (I went up and checked and came back with pix showing it was impossible for anyone to live in the small cramped space but didn't help). Even when I used logic to explain there was noway anyone could enter the attic without going through her attic access in the bathroom she imagined they could 'somehow' get in from the outside (not)...
There were nights she wouldn't sleep because of these delusions. There were times she would call me at 2am hysterical about one of these.
Me trying to 'fix' and 'help' her delusions did not make them go away nor make her feel better. And they kept getting worse, more frequent and expanded. Trust me, at this point, NOTHING is going to help except for rx.
I would highly recommend going with her to ALL her doctor appointments. At that age, and with such delusions, they don't always 'hear' everything the doctor is saying, nor do they ask the right questions because they don't think they have a problem. Talk with the doctor about these delusions - there are medications that would help.
You may also need to consider her not being able to live alone anymore. If rx cannot reduce/alleviate these delusions, it will affect her and your quality of life.
Take her to a different doctor that does more comprehensive testing. Tell them about the delusional behavior. If it's not dementia, what is it? Tell them you need a diagnosis. Stop paying for things out of pocket. Use her finances for her dentist/doctor visits. If there isn't already a plan in place for her, start working on one. Get POA paperwork started if she doesn't already have that in place. Get a handle on her finances. Does she have savings, does she have long term care insurance, how much equity is in the home, etc. Is the plan to move her closer to you? If so, start looking into assisted living facilities and get on the waiting list, etc.
Last year she was tested for dementia, but we were told she didn’t have it. Brain scan only showed mild, age-typical cerebral atrophy and moderate chronic subcortical white matter disease. Her PCP thinks she possibly has bipolar, but it hasn't been confirmed or diagnosed. I plan to speak to her PCP more about this and see if she can be tested again, not just for dementia, but for other mental diseases.
I suggest having your mom tested for other issues besides dementia. The go-to is always Alzheimer's and dementia, but once the brain starts to go, there could be a number of other problems with her mental and emotional well-being.
https://www.ascp.com/
https://www.ascp.com/page/custom_directory
For example; If I think I keep hearing the radio too low to understand the words, it usually means that earwax has built up and needs to be removed. My brain is picking up sounds it can't identify and decides to "tell" me that it's a radio.