Hi,
My sister has finally after two years agreed to take the proper dosage of her pill for nighttime. But she is still saying mad stuff on a daily basis so the mental health team want to give her something for during the day as well.
She doesn’t want to take it and her madness is taking its toll on all my family, especially on me and my other sister. My ill sister doesn’t want to take more meds because she is vain and thinks that the tablets make her put on weight. She also thinks she already sleeps too much.
Has anyone had any success stories with people agreeing to take meds and staying on them for a good amount of time? Any hints, tips, hacks, etc would be much appreciated.
My suggestions are probably not ethical and probably not popular with anyone —but before my son became compliant and then eventually stabilized. I would literally say or do anything to get his meds in him on time as prescribed. I would not take no for an answer. It was an unpleasant time. I realize this does not work for everyone, or maybe rarely anyone.
I also got legal guardianship of my son early on (when he was 21, which gave me some rights as to what I could insist on or not and a front row seat to his medical care. I often would say if he wanted to go with me someplace or he wanted another pack of cigarettes or a pop, I would say, as soon as I see you take your medicine we’re good. I wasn’t above bribing, stretching the truth somewhat saying that the medicines absolutely had to be taken a certain way or a certain time for safety sake, because he did have issues with “safety of things”. It helped that I could sit in on the appointments with his doctor because if I had sent him in alone he would have been quiet and said that nothing was wrong and that he was just fine. Then I got the full floor show when he was at home.
Anyway, he got very mad at me all the time because after he told the doctor he was fine I would say well, doc he is still hearing voices and he still thinks the government is watching us and he unplugged all the electrical items in the house yesterday and took all the light bulbs out of the lamps and he made cereal with mayo and ketchup for lunch. The doctor was glad to have correct information.
Then the doctor would adjust the medications and stress to my son that he HAD to take them and I got the doctor on board with saying to take them correctly and on time for “safety sake” which was in and of itself not a lie, but it was in a round-a-about way of exploiting one of his fears but for his own advantage.
This was around 10 years ago and today my son is stable today, no voices or any major delusions, mostly just some negative symptoms but he manages his medications by himself and does an excellent job. He takes clozapine 125 mg 2X a day and depakote 1000 mg 2X a day and 1 mg benztropine at night. Today he has no memory of being angry at me for all the times I spoke on his behalf or made him take his meds or bribed him or with held things he wanted until he complied. Today he is happy and will tell you so and recently he told me how thankful he was that I stuck with him while as he puts it " he was a butthead" <–his words not mine. I love that guy, he is 35 now and still lives with me and likely always will but he can take care of all his basic living needs himself so long as he has me around to bounce his thoughts off of and often I am there for direction or redirection and reality checks when needed. I am the only companion he will trust or accept. I hope someday magically that changes but I am not holding my breath on it. Still if you ask him he will tell you he is a happy person and content. Good luck @hermana80, I wish you well. PS Weight gain and sleeping a lot is to be expected with many medications, once the medicines stabilize the patient or at least once they stabilized my son he was able to exercise and be more conscious of what he ate and much of the weight came off and although my son has always been a long sleeper his whole life he is now able to go to bed and get up with ease and doesn’t sleep much past 10 hours ever…great compared to the 18 hours of sleep a day in the beginning. anyway, best of luck.
Maybe a friendly bribe? You, or whomever is their primary caregivers, can use a small amount of cash or a gym membership as incentives to stay on meds.
Listen… mirror back “exactly” what she says to you…then pause…
empathize… summarize what she shared…and…let her know you understand about the weight…and would feel the same way. No fun gaining weight and sleeping alot for anyone…
agree…ask what matters to her, ask what she thinks is a good way to manage DAILY psychosis, ask what she wants to happen, then identify “what you can agree on”…ex: controlling weight, maintaining good health,
Partner…determine together how you can be partners for her desires
My son went off his meds, ofen, and would end up in the hospital to get him back on track. So now he gets a once a month shot instead. No more wondering if he is taking his meds.
Thank you for sharing your story. Can I ask you, how did you go about getting guardianship over your son? I am thinking of possibly trying to do this for my brother. Thank you in advance.
I went to probate court and filled out the papers they gave me and since my son was an adult I told them that he was responsible for his own self (income wise) and since my son was unemployed, and had no money, I think the total cost was about $45 (this was 10 years ago). His caseworker advised me to do that since he knew I had no money. Anyway, then my son was assigned a pro bono attorney by the court to defend his rights as is the law. My son was so delusional and unable to string more one coherent sentence together and his attorney could not even communicate with him very well, he just sat there kind of hopeless looking, I had my sons case worker with me who backed up all of my statements about my son’s delusions and inability to work or handle any money, or understand basic things he was supposed to do every day and you are allowed to bring in any family members or others that can talk on the need for guardianship with you. My son kept arguing that he was “fine” However the probate judge clearly saw how ill my son was and awarded me full guardianship (which means my son was declared incompetent) and I was also made his rep payee so that although his SS money goes into a joint account I am the only one that can make withdrawals from it and I decide how the money is spent. Even though my son is much better today handling his own money was a major stress for him, now a day she has a prepaid Paypal card for minor incidentals when we go out, he might buy a pop or a sandwich or a candy bar. I put maybe $20-$30 on it each month and some months he doesn’t even use it. Anyway, the guardianship is a huge responsibility, but without it I could have never made my son get the help he needed because he would not and could not verbalize to any doctor what was wrong with him. I had to give the doctors every detail. Without those details he would have never been medicated properly as he is today and be doing so well. I am in Ohio so I am not sure if probate works the same every where but google your county’s probate court and there should be a section for guardianship and a phone number if you have questions, do some research ahead of time and good luck to you!! I hope I helped.
Thanks, Catherine. Will try. She loves money; maybe that will work. She hasn’t been to her mental health worker for ages. I’m going mad now and I need support so I’ll be telling MY psychiatrist everything about her. I’m literally going crazy. I have depression myself. She WANTS there to be something wrong with me so as I’m in the same boat as her.
Thanks for your advice.
xx
Wish that could happen, but for want of a better word, she’s mental. (Sorry, realise word choice is not the best, but feeling very frustrated at the minute)
I understand the crazy aspect as a caregiver, I could not have succeeded as well as I did had I not been in therapy myself. The entire experience of getting my son from extremely sick to stabilized added to my complex ptsd that I already had so I have to continue with therapy indefinitely even though today my son is no longer a source of stress for me (I never thought I would ever be able to truthfully say that) Today I am still processing emotions and working on emotional regulation and relaxation and other stuff. It is essential to have that kind of support when you are a caregiver. Stay strong friend.
Hi Catherine,
I have complex PTSD as well and it’s hard for me to deal with her harping on at me. I wish she would just give me a break.
I have to process emotions too, learn how to relax and accept support from other people. It’s hard to stay strong when I feel that all she wants to do is tear me down to be like her. She wants me to be exactly like her. Sometimes (and this is terrible) I feel like I actually hate her - not because of her illness, but because I really feel like she’s tormenting me on purpose. I think that she uses her illness as a mask to hurt me. Sometimes I don’t think there’s anything wrong with her at all other than she’s envious of me for some unknown reason. I don’t know why anyone would feel so envious of another person that they would actively go out to destroy them, let alone your own sister. I must learn to defend myself against her. I’m so tired.
Maybe you can look into a supported living arrangement for your sister. I don’t know where you live but here they have apartments, some subsidized and professional people look in on the residents daily. I mean maybe you have to work toward living separately, however that might look.
I don’t know your sister’s diagnosis but I am suspecting it is likely more than just a contrived character flaw. I get how it can feel like the behavior is deliberate and calculated and directed right at you. I have felt that way before myself. My sister is schizo affective and seldom takes the correct medication. She lives in a tiny efficiency and muddles by but when we interact it is really difficult. I still love her and I think in some way she loves me as best she can but it doesn’t often look like she loves me by her behaviors. I think it would go better if she would stay in treatment.
When my son was ill he was often extremely hateful toward me and sometimes the words “I hate him” stuck in my throat never uttered and soaked in guilt. How could I ever feel that way? I didn’t understand. Emotions just are. No right and wrong.
This is where a skilled therapist can really help. My son and I do fine now that he is really stable. My sister I still interact with but I have strong boundaries with her. Time limits and I say no often. If she does go back to her doctor which she always says she will (someday) …maybe things can improve but if not there will always be time limits and strict boundaries between is so I can stay okay and continue to feel a kinship with her.
I know it has to be so hard with your sister but the truth is something serious has to be bothering her for her to act out so much with you that it is making you feel unwell. Maybe it is something she can’t even admit to , or maybe she is operating under delusions or “false beliefs”. Only a professional can diagnose her. The most important thing you can do in this situation is to take good care of yourself and get the help and support you need to figure out how best to proceed.
This book “I’m not sick, I don’t need help” was an eye-opener for me, as the mother to a 30 year old, male. Diagnosed with schizophrenia 12 years ago. https://namila.org/book-spotlight-im-not-sick-i-dont-need-help/
I warmly recommend you read it - it explains why it is so hard to have our loved ones accept and comply with treatment. All the best to you and your sister
I realize this is an old post, but since someone added recently, I will contribute what I found successful.
My version of ‘bribery’/incentive: Not a lump sum, but a small amount every day, based on compliance. That way, a single miss can be managed and not feel devastating. Also, it provides immediate reward and doesn’t feel so threatening.
Praise, praise, praise every time she is compliant and you can make an honest compliment on how it is helping her.
Weight gain and drowsiness are real side affects that can impact compliance. Acknowledge her concerns and help her monitor these and develop ways of dealing with them.
I attended Dr. Armidor’s LEAP webinar last week. And I’ve read “I’m not Sick I don’t need Help” three times. It really is about creating trusting relationships. Not trying to convince your loved one they are ill. Still it’s tough to get your loved one to be compliant. I feel I can never let my guard down.