Hi there,
This question has come up several times, but I could sure use some advice/support. My 81 year old mother is living on her own 4 hours away from us. In short, she adamantly refuses any in-home help, refuses to move, refuses meal delivery, and only occasionally visits an urgent care doctor. She imagines people walking through the house, hides things and then blames “them” for stealing things, hears voices and knocks at the door, thinks the neighbors are trying to steal her property, etc. On good days, she goes grocery shopping, gets her hair done, gets her nails done, and weeds the yard.
Both of my parents (dad now deceased) have a long history of avoiding doctors and not following medical advice. My mom has a long-standing UTI that the urgent care doctor tries to treat with antibiotics but my mom does not follow instructions and skips follow-up appointments. At one point last year, my dad called 911 because she was feverish and babbling. I spent two days on the phone trying to convince her to stay in the hospital so doctors could treat her infection but she checked herself out against medical advice.
After a great deal of gentle encouragement, I finally got her to an appointment to have an abdominal ultrasound but she skipped her follow-up appointment to get the results because she said she was followed to the doctor and had to get away from “them.” She ended up going to the sheriff’s office to report people from my dad’s old nursing home were trying to steal her money.
We visited her for a week and things were mostly fine. As soon as we left town, all heck broke loose. I want to get her some help but I have to be extremely gentle with my encouragement or else she accuses me of working with “them.” She’s already written off all of their friends, the local police, an in-home care provider we got for my dad, their trust lawyer, and most of the neighbors as being in on the conspiracy. I can’t afford to cross a line with her because she’ll stop trusting me and have no one to help her.
I feel like I’m in an impossible spot. When we’re not there, I spend hours on the phone with her each day. We talk, I help her fix the TV remote because she pushes all of the buttons, get her text messages because she can’t remember how to get them, and figure out stuff she can’t work in the house. I have most of her bills sent to me so I can take care of them. I just can’t get her to address her physical and mental health and it’s taking a toll on all of us.
As I said, I know this topic has come up before. Has anyone had a eureka for helping an elderly parent out of a spot like this?
If she ever ends up in the ER, use the words “unsafe discharge”
Other than that, it seems there isn’t much you can do about it.
Document everything.
When she pitches a fit, remind yourself she probably won’t remember what you’ve done, and blame her woes on “them.”
1. She goes into safe managed care
2. She dies at home. Whether fall, sepsis from UTI, wandering and lost, burnt house.
Same outcome is likely.
So let us take the second choice first:
1. I used to feel placement was the ONLY thing. I feel that less (remarkably as I get closer to time to choose safer placement, right--I am 82). I now tend to think that if we wish to die at home of pneumonia, UTI sepsis, fall, whatever, it is perhaps a better thing that facing down further losses in a nursing home for a few more years, then perhaps we should be allow to do so.
That's choice number 2.
Going back now to choice number 1., placement:
1. Going into care requires diagnosis and POA
You have neither I am assuming
She's unlikely to be cooperative in testing for dementia
It's likely too late for a POA
Summed up.....you are looking at a lot of time and work and argument.
2. You may at this point need guardianship. You will
A) Spend a lot for it
B) May not win it
C) May give it over to the state through APS call, but then you have nothing to say about where, when, why and how placed, nor about her assets, home etc.
I doubt you feel a whole lot better hearing all the facts here.
If you remain where you are, essentially talking to her on the phone, then EVE-NTUALLY you will get "the call" (as I did for my brother: " Are you aware your brother is here with us at Desert Regional Hospital?")
OR
from the coroner: "Sorry. There has been a fire (accident, incident, fall) and your mother............
This is awful. I understand. And the truth is that there is very little here that has a good, a happy, outcome. And I am no longer certain which is the best route to take. APS call for assessment? Leave things be? See an attorney?
I can honestly only wish you best of luck. We have this question over and over and over again and you aren't alone. Continue to read on the forum, see what folks are dealing with, how they handle it, what works for them, what doesn't. I am so sorry.
Thank you so much for your thoughtful and candid reply. My parents have always done things their own way and you very wisely pointed out that people need to make these decisions themselves, especially something as big as deciding where and how to live. I know “the call” will come one day, as it will for all of us, but I’ve been hoping to make her remaining time easier.
You’re absolutely right about her not cooperating in any kind of mental evaluation but I’d gladly settle for a couple of regular doctor visits. I, myself, am a cardiac patient with a pretty serious condition and my mom tried to talk me out of seeing my cardiologist so much. So I’m trying to talk her into seeing a doctor more and she’s trying to talk me into seeing a doctor less. Go figure.
Thank you again for your perspective. It helps to hear someone acknowledge that there are tradeoffs to different aging strategies and people weigh those tradeoffs differently.
Are you her POA? If not you may want to take her to a lawyer before she gets too far along and won't be able to legally assign anyone to be her POA.
But because she is so paranoid(which is a definite sign of dementia)she may not want you to be her POA, so you may have to file for guardianship which unfortunately costs thousands of dollars.
And because you don't live close you may just have to wait until an incident happens again where you can then insist to the doctor and social worker at the hospital that she CANNOT live on her own any more and that you CANNOT take care of her, so she will have to be placed in the appropriate facility.
And other thing....as long as you keep propping up her false sense of living independently by calling her every day and "fixing" small issues over the phone, and having her bills sent to you, she will NEVER admit that she is over her head and needs help.
You may just have to stop enabling her, and let her fail before she reaches out for help and realizes that she no longer can live by herself.
Oh dear, I’ve been aiming for “helping” rather than “enabling” but you raise an interesting point. My dad was sick for almost five years. They were in an almost constant state of crisis during his illness and the crises have continued almost a year after his death. I guess I’m in the habit of swooping in and fixing things. I will definitely give this some deep thought.
the paranoia and the refusal of help is a common problem
It sounds like it’s at the stage where your mother should be admitted fir a word into a home full time
she sounds like she’s now a danger to herself
I think the first thing to do is speak to her doctor
relay what you’ve said and your fears and hear what they have to say
The conditions you mention are standard stuff affecting old people so they shd be qualified to give you the best help
as an interim - although toss of a coin if it would work I’d arrange a home help to visit while you are there - pretend you s hurt YOUR arm and need help and get them to converse with your mother
maybe she may click with them ?
I think you need to speak to her doctor before you get ill over stretching yourself and your sanity
best wishes
Sadly, the stubborn and contrary elder exists in some cases. My mother was determined to live alone with plummeting blood pressure of 60 over 40. Did NOT happen! I had to move in from 500 miles away. I don't advocate this for you. To say it was challenging would be an understatement.
Stop helping her by phone several times a day (unless you really want to).
She is entitled to live (and die) on her terms.
You can, of course, try getting her admitted to a nursing home. If she ends up in the hospital for any reason, do not agree to pick her up and take her home.
Tell them that there is no one to take care of her. If she is deemed unsafe to live on her own, she will likely be transferred to a nursing home.
You know your mother. Will she hate being in a nursing home? Does she need to be?
You say everything was fine while you were there, then all heck breaks loose when you leave. That, along with the phone requests, sounds like she is acting out for your attention. Stop giving in and see what happens.
This feeling will change when you realize what your limitations are in what you can and cannot do for the welfare / benefit of your mom.
"I spent two days on the phone trying to convince her to stay in the hospital"
Stop trying to convince her --- why are you doing this?
Stop offering help over the phone.
Stop and realize what you are doing ... you mean well by offering help as you are although it is not helping her - it is hindering her from getting the actual 'real' help she needs, i.e., placement / no living alone / nursing home ? APS call to investigate situation / what her needs are that need to be addressed.
Unless you have legal authority to make decisions on her behalf due to her being unable to care for her own welfare, she can do as she wants.
- While this puts you in a difficult position as you want what is best for her, you need to realize that you can only do so much - and that you ARE NOT responsible for the decisions she makes for herself.
- You need to learn how to let go and accept what is (as hard as this is to write and likely to hear).
Learn how to take care of yourself.
Learn how to set boundaries for yourself (you can only do this when you stop taking (or wanting to) responsibility for her decision(s) making about her own life.
* If she doesn't want to go to an MD - so be it.
* If she doesn't want xxx - so be it.
If you do not learn what you can and cannot do for her, you will end up with a breakdown or certainly have adverse health issues.
Stop spinning your wheels (it is / will ruin your mental and physical health).
You do what you can and then you stop.
Ask yourself: What is running ME ? (meaning YOU)
- is this a pattern of yours from childhood?
- Are you / were you put in the role to take care of others / her as a younger person?
- Are you feeling guilt about something?
Allow yourself to grieve this loss. Realize it is a loss.
Get legal documents in order as best you can. And, if she says NO - let it go.
You need to have as full a life as you can. First, you must believe this in order to take actions that will support you. What supports YOU will support her.
If you can afford it, hire an independent (medical) social worker to check in on your mom and/or work with her. If Mom refuses, there is your answer.
Gena / Touch Matters