16 years undiagnosed, is it too late?


#1

Hi,

I’m so beyond relieved that such a website exists! I really could use some knowledgeable people to give me advice. My mom had been hearing voices, speaking in scary voices that do not sound like her/reply to them in her own voice. As well as self harm, scary faces, screaming at times when she thinks she’s alone. Most of these things have happened when she thought she was alone. As a 14 year old girl I was extremely frightened by all of this. Not having any idea what was happening to my mom, whom I love dearly. My family is Christian so when my mother said she felt she was being tormented by demons in her head, they truly believed her. She was around 35 when this started happening. She started going to places to get “deliverance” as she called it which seemed to make her worse. She has threatened suicide on many occasions. Fast forward 16 years and I have finally convinced my father to allow me to try traditional help for her. It’s been very hard, emotionally draining at times as she has so deeply believed in her delusions for 16 years. I feel like I am an army of one at times fighting against her suffering. She has done pretty well at hiding it just enough to have people think she is flighty and a bit forgetful or just a bit off. A few months ago I heard her speaking in one voice that sounded very scary and then respond in her own to it. I decided then enough was enough and I had to do something. I was able to convince her just to try it this way since the other things she had tried hadn’t given any success. I recently had her see a RN Psychiatrist and she was prescribed medication. It’s a first generation kind and it has made her a bit of a zombie. She has tried hiding her pills in her mouth on several occasions which has been stressful. My question is this: is it possible she will regain some of the person she was before this back? Or is she gone on untreated too long and I shouldn’t expect much change even with medication. No matter what I will continue to be her advocate and be her support but I just would like to know if I maybe getting my hopes up that I will ever get my mom back.


#2

Wow, you have been through much and so has your Mom! Don’t ever give up hope of finding your Mom in there. It is true that it’s better to catch it early but it doesn’t mean there is no hope after years of this. Your Mom may need to try out different meds to find the one that is right for her. I am hoping that the prescribing psychiatrist will be attentive to the responses your Mom has to the medication and will be willing to adjust if needed. My advice is to keep a journal of sorts so that when she has another appointment, you have a running list of how the medication affected her. It seems that many meds take a long time to work. I know the one my son is on took a few months before I even noticed small changes, then those changes kept increasing those positive changes over the coming year and a half. Unfortunately, they had to go through 4 different medications before finding that this one worked for him. This is a great site to get advice and support from, but I also hope that you are getting local support as well. Very difficult on the caregiver/advocate. Keep on hoping to see the Mom you know is in there. Sometimes hope is all we have, and when you get those glimpses of her, you will be inspired to push through the difficulties. All the best, we are all here for you!


#3

Welcome…

My mom is dx, did the religious thing my entire life…I’m now almost 50. She started meds a few years ago, but stopped again.

Our boy is also dx…he is now 14.

The meds take a long time to settle, and still require changes here and there.
Our son is med compliant, mom is off and on…for years.

It’s easier with son in many ways…he knows that hallucinations will return. This motivates him right now to take his meds.

Still, I have sat with him in pdoc office, and had him announce he’s “not taking meds anymore, he doesn’t need them”. Woah! He’s done this several times. Fortunately, for us, the pdoc did not hesitate to make it clear: take your meds!

Only in the pdocs office though, and…in case it matters, this was just as he entered a suicidal period.

Will you get her back? I don’t know…my mom is not med compliant.
Our boy? In some ways he’s fading away…

Other times, he’s spot on.

Welcome…


#4

Hi leiann!

Thank you so much for your message. Fortunately I live in an area where there aren’t very many psychiatrists the ones are here our nurse practitioners which I hope is still adequate for her care. I don’t really know enough about the differences in between a nurse practitioner in an actual doctor. My question is how long before some of the side effects decrease? Does your son still have issues with side effects or do they slowly start to dissipate over time . They put my mom on a first generation antipsychotic medication and it made her very zombie like now they’ve started her on a second generation medication and I’m hoping that maybe that will be different. I don’t really have tons of support here. my dad is giving her the medication which is great that he’s doing his part on that. However I don’t really have tons of support here. I go to all doctors visits and I’m becoming her medical guardian. I have a younger brother but he is not supportive and he doesn’t want me to tell him anything about her treatment. which is difficult because even though I’m doing all of legwork by myself. it would be nice to be able to just let him know what’s going on and feel like he is involved at least in listening to the struggles or the positive things that are happening. she is the only person in my family that is like this and weve gone so long without her getting help, I feel that that’s probably part of why he is so unwilling to put himself out there. My thought is this I was a child when this started happening to her and then as a young adult I wasn’t really prepared to understand what she needed and now I feel empowered that I’m going to help her in the best way I can. she deserves to have her mind freed of this.


#5

I would imagine nurse practitioners are the same everywhere. Here in Canada, they are Registered Nurses who went on to train in the basics of Dr. care. They can prescribe meds, and usually refer to specialists if they think the condition warrants it or is bigger than their training. Awesome that you can go to the appointments with her. Many of us on here don’t have that as our loved ones don’t even believe they are sick and go to the Dr.'s resentfully. As far as the side effects go, every single person reacts differently to each of the meds. My son has been on Abilify, Respiradone, and another I can’t remember the name of right now. Each of them caused different side affects. Some caused rapid weight gain, and others, increased agitation. The problem I had was that they never worked well for my son…I think. I say that because he wouldn’t stay on them long as he believed he wasn’t sick. They then labelled him as “drug resistant”, and made me his medical substitution decision maker. Put him on Clozapine, and must take it or will go directly back to hospital, which he hates. Side affects on this drug are only two for him. He sleeps a lot, and increased saliva flow which has decreased slowly over time. Again, all meds are different for each person and will work on each person with different effectiveness. Hopefully they find the right med, or combination of meds for your Mother, and that if your brother see’s some improvement, he may be able to get more involved and support both of you. If not, it sounds to me that you are a strong and can do this. I’m glad that you reached out to this group though as no matter how strong we are, we need to ask questions some times from people who “get it”. I would suggest looking into a NAMI Family to Family course as well if you can find one near you. I am in a rural area so had to travel an hour to get to one, but found it was worth it. Some sort of counselling for you too as you have had a lot to deal with in your life by the sounds of it. It affects who we are, and sometimes we need an outside person to help us see how it has affected us…good or bad. Your Mom is lucky to have you. I am here if you have any questions at all, or just need to vent. Lots of us here are.


#6

It does help…
I can vouch for that.

The privacy and the trust established between a client and therapist is so helpful. I especially appreciated the fact that someone, with knowledge as to these situation(s) was listening. I usually ask at the beginning for one of my therapist roles to be: keeping on eye on my mental health, and ensure that my children/husband/self are safe under my care.

Sometimes, (and this does happen occasionally) the pdoc or therapist will notice that I need a break, and will recommend it. I don’t always notice the signs of burnout, but they do. Other times? It’s the validation that the situation (whatever it may be) is indeed stressful, and that what I’m feeling or experiencing is normal.

Normal is subjective, but nice to hear.
Taking care of my mental health, ensures that a resiliency exists in order to manage any stressors that may come along.


#7

So true @Squid ! At certain times, if this is the only self-care we can manage, and if it’s with a therapist that is a good fit for you, it can be the most beneficial. For me I find that since there are no black & whites when it comes to this illness, I also need someone to just say “what you did was right, you are doing a good job”. From the inside, it is very difficult to see sometimes as everything feels like you are screwing it up. And yes, you are absolutely correct, that outside person can be the one to say that you are showing signs of hitting your limit. So smart that you told them exactly what to point out to you! We are just parents, human, and we have taken on a super-human job for people that we love more than ourselves. That makes it much more difficult to see clearly what is happening to us when everything that we have, and are, is focussed on them.