My mother is only 59 years old. She has been going through a lot of stress. She might be schizophrenic, but I know she has epilepsy, as well. She is taking medication for her seizures. She won't let me talk to her doctors because she doesnt want me to be nosy and in her business. I am the only child and person living with her. She hides all of her personal information from me and refuses my help with doctor's appointments. She is free to make decisions on her own, according to the paramedics when I call for an ambulance as they can't make her go to the hospital if she's answering basic questions normally and demands to stay at home. Her health is failing. She falls and gets bruised up a lot, she's unsteady when she walks and refuses to use her walker at times when she has nearly no strength to move, she randomly repeats herself talking over and over, at times, she's barely eating and lost a significant amount of weight. When she does eat, she would cough some of it up and continue having this bad cough. When she talks, her lips are barely moving and she's slurring her words. She confuses the TV remote for her phone, trying to change the channel. She has hallucinations. She constantly mixes up her words and can't physically say the words of what she's trying to say. I don't know what to do when she's shut me out of any access to what's going on with her health. She's not telling her doctors everything that's wrong. I can't be here 24/7 with her all of the time since I have to work. I need help 😭
Thanks for the feedback.
It sounds like your mom is in withdrawal or has something perhaps worse than her regular meds that she is adding to the mix. This is very dangerous.
Perhaps your uncle is working with the doctor but he should have explained it all to you so you would have been better prepared for the backlash. Does he set the pill pack up or do you?
Find an AlAnon meeting. Or better yet, one for narcotics. This will help you understand what is going on and give you some therapy at the same time.
This isn’t your fault but it is your responsibility to take care of yourself and since you’ve taken on this job you need to let the ones who can talk to the doctor know you can’t do this as it appears today.
Your mom isn’t going to like you anytime soon because she sees you as keeping her from what she wants. The pills. She is trying to feel better and mistakenly believes absolutely that the pills will make her feel better.
You need out of this but if you feel stuck then you need a buffer. Have uncle come over and give her the pills and take them with him or you are going to have to leave. Can’t your dad check if she has fallen? is your dad giving her drugs or alcohol?
Tazzi, many caregivers have good intentions and think they can manage because they have no choice. We don’t know what we don’t know when we start off. But you need to push back with the ones who have authority to do something. Read Alva’s message to Annie. I think she meant it for you.
I’m so glad you have a job. Don’t quit it. You might try to find a second job to help you be able to move sooner.
And It looks like mom has other health issues as well. All of this is not because you don’t know what to do. It is because you aren’t a drug counselor, a rehab or a medical doctor. She needs a lot of help.
That may be the wake up call the family needs that mom needs a higher level of care than she is receiving. You are supposed to see that she doesn’t fall. She’s got enough going on w/o falling to call for help.
oh and an oximeter is the small device that you put on your finger to check your pulse. Just Google pulse oximeter. They are less than $20 at the drugstore or Amazon.
"When she does eat, she would cough some of it up and continue having this bad cough." This I would worry about. She could be aspirating food into her lungs and get pneumonia which can be serious. She needs a swallow test done.
Your Dad is responsible for your mother. He needs to get her help.
There is little you can do. You can, if you and Uncle discuss and agree, call in APS for wellness check on Mom. You and he can express that you are both helpless to provide what you feel is needed diagnostic help with her. Leave it to their assessment. If there is nothing you can do, then smashing your own head up against a brick wall is only going to hurt you, and I would do all I could to remove myself from a self-harming situation. You cannot help those who will not be helped by their own choice.
If you doubt this you can call APS.
I would move out of the realm of a family member with mental illness who was no accepting help and was living in a dangerous manner.I would be unable to change of help the situation, and being involved would enable it. I would move out of the way of such a person and not be involved if APS did a wellness visit. I would leave the phone number to APS and 911 with my mother and leave. Period. You cannot help those who won't be helped.
Please read Liz Scheier's good memoir called Never Simple. Her mother was mentally challenged and she tried all her adult life, until her mother died, to help her. She was a smart woman and availed herself of Social Services of the city and state of New York, all to no avail whatsoever. While this won't make you feel better it will show you that you are not alone in your helplessness.
If you think mom is not safe you can report to APS as a "vulnerable person" and the concern is lack of self care, (If mom drives this could also be reported to the police....please say she does not drive)
Unfortunately in many cases like this you have to wait...and wait. Until something happens that will force her to get help.
Now for you...
You need to have a discussion with mom and it should go something like this.
"Mom I know you don't want me to know all about what is going on with you but I do need to know what you want me to do if something happens.
Do you want CPR?
Do you want to be Intubated?
Do you want a feeding tube?
Do you want IV's
If you get the answers to those questions at least you will know what her wishes are and can make those decisions with a clear conscience.
I'm sorry you are being forced to make these decisions, your mom is so young. I do hope that at some point she realizes that her refusal to discuss th8ings with you can make your decisions more difficult.
I’m so sorry for your situation.
Your mother must be very frightened.
She sounds a bit paranoid and perhaps depressed?
Does she have a drug history (take too many Xanax, etc) or does she drink? Is it possible the stress has her self medicating?
Has she had a recent loss? Does she bathe. drive, cook, go out with friends or family? Think back to what was going on when this troubling activity started or increased?
Did she recently start a new med that might not be working for her?
HIPPA laws work to protect the privacy of individuals and make it difficult for family to receive helpful information.
Doctors are able to receive information from you just not discuss it with you if you don’t have a HIPPA release.
If the doctors office offers a portal you might see if you can enter information that way or find out more about her condition.
If you can access the portal you could write something similar to what you’ve written here with some dates and times for context for the doctor who prescribes her seizure meds. Is this a doctor she regularly sees?
She has the meds for seizures so she must have some sort of diagnosis already? Do you pick up her meds? Does it give you any clues on the paperwork that comes with the meds from the pharmacy?
Take a look at all meds she takes and see if the number of pills left match up with when they were prescribed and today’s date.
She may be taking too many or not taking them properly.
Include these findings to the doctor.
Don’t confront your mom that won’t help you get her in front of a doctor. Is this new for you to be checking on her meds or do they know you at the pharmacy as the person who picks up her meds? Sometimes the pharmacy can help you understand what to look out for with her combo of meds.
You could fax your note to the doctors office or mail it. Don’t be surprised if you don’t hear back from them but at least they will know her current situation. I would also call them to let them know you have sent it. Perhaps you could suggest that they call and ask her to come in to discuss her meds. Do you take her to her appointments? Ask the doctor to not mention you.
Keep your notes with you and when she does get taken to the ER you will be ready to provide them with a more detailed description of what’s going on beyond how she presents.
APS has a difficult time assisting with this age group as they don’t have Medicare resources. But depending on where you live you might be able to get some guidance from them. I have a mentally ill family member and this I learned from an APS employee who had contacted me regarding my LO. it’s worth a try to speak with them.
So when you approach EMS remember your goal is to get her to the ER and tell them the portion of what they need to hear in order to convince mom to go. ….sudden confusion, slurring of words, you don’t know…could be UTI.
If you have an oximeter to check her O2 and pulse and a blood pressure cuff this could help as well to keep a log but also to tell EMS, her BP is very high or her pulse is rapid or whatever it reads. Or I’m afraid because she’s slurring her words, falling etc.
You sound like you are also very stressed and who wouldn’t be. Do you have a friend or relative you can confide in who knows mom’s history and wouldn’t make it worse by telling mom you were worried? Perhaps see your own doctor or therapist. You are going to need support while you sort this out.
Make an effort to take very good care of yourself and let us know how it’s going, we care.
I'm trying, but I'm not fully mentally stable myself and easily get depressed when she brutally scolds and insults me for trying to help her. I can't afford a doctor right now and am struggling with bills, but I have to be here in case she falls. I don't really know what to do...
I can see if her insurance approves for an oximeter and test her.
My dad mainly takes her to the appointments, but he's gonna be busy for the next few days.
My uncle is the main person but for my mother being problematic he limits communication with her, and he's involved in a planned family reunion in a few days. He's gonna be busy himself and say she's not gonna listen to him, anyway. I will definitely take your message and save it. I'll give you guys an update, soon. Thanks so much.
But if she's not be open with you about her health all I can think of is for you to call Adult Protective Services and report to them what you've told us here and let them come out and do an assessment, and take things from there.
You can also either send her doctor a note telling what is all going on or send them a message via the patient portal so they are aware of everything.
And of course you can call 911 and tell them that you think your mom may have a UTI or is having a stroke(even if you have to lie about that) because she's not acting right, and insist she be taken to the ER, despite what your mom tells them.
Or if it were me, I would do all 3 of the above to cover all bases.