Family and Caregiver Schizophrenia Discussion Forum

How to Continue our Miracle of Healing?

Family
#1

Hi everyone, I hope you and your loved ones are managing during these days and I’m so so sorry for those who aren’t feeling well or not coping with what’s happening currently in the world…

Last time I was in this forum seeking your support was two months ago, and now I need your help again, I thought I’d last longer in my happy healing time but I’m sorry it’s short lived… I went to stay with my afflicted sister for two whole months in Jan and Feb out of which 41 days in involuntary hospitalization. In the beginning it was traumatic for everyone, then two weeks in, we start to witness gradual recovery from Alogia symptom of the affliction that rendered her zero communicative for years and non functioning but they did something good, they gave her what it seems like the perfect set of medicines that made her slowly open up and talk to me, and accept me as her loving sister and miracles started to happen to whom I thought would never speak to me or look at me or hug me again, but after the many visits and finally I took her out, driving her out of that place and she’s not seen the streets for four years prior to that, she looked mesmerized by the trees, a bit uncomfortable but free at last, and we had the best two weeks since years… the first two months of 2020, and during this visit which was the most intense experience of my entire life, I finally facilitated help for my afflicted sister and she hated the hospitalization of 41 days but gained magical recovery through most needed medication. The key for her affliction, is staying on medication so she does not lose the ability to talk/lock her self in her room like how she did for years refusing help and cause depression for many family members who didn’t know how to handle the situation. I was able then to bring her with me to where I live as I convinced her it’s a vacation for her to give her much needed beautiful outings and scenery as she hasn’t been to a beach in ten years, she came with me and walked into the sea with open arms like it’s a scene about self love and liberty and she swam with a big smile on her face everyday for seven days… then as the second week post hospitalization was about to end she had a follow-up appointment with the psychiatrist for medicines refills and she said “I don’t want the medicines, they gave it to me and now it finished, it means I don’t need it anymore”, she wasn’t talking only about her anti-psychos meds but also about her diabetes pills! I begged her to stay in the city/country where I live so she can stay happy with me and I can take care of her and take her to the beach everyday but she had to accept to transfer her file and she refused saying “I don’t want this place to have my records” and she promised she’d go to where she used to live with brother for few days, see her doctor, get the necessary refills then I book her a ticket to come back to me… then guess what happened, they closed the border between the country where she is and I… I couldn’t bring her… I video call her often and she keeps on asking me every day of when I’ll come to her and I just cannot, I even call our airports, airlines, many sources and I just can’t go to her nor bring her to me and she’s withering again and said will stop taking the medicines which will run out of tomorrow!!! She was afraid of this covid19 and doesn’t get this virus causing lockdown in her city and my city and many countries around the world… I called a psychologist who offered help for those affected by covid19 and I could tell he was really not sure what to tell me shocked of how it’s affecting us, I told him my sister was isolating for years and I couldn’t live with it and after she and I went through so much trauma of the involuntary hospitalization day procedure itself and the 41 days she stayed there, then she gets magical beautiful insight and we love each other and laugh and smile and travel and go to beautiful places for short amount of time then we separate with a big intention of healing and get the meds and come back then this horrific measures taken and now we are forced to isolate? I asked him, if only I let her be in her unmedicated, non-communicative and isolation state until this global virus goes away somehow like how it did in the past with other pandemics then when life is back to normal, I go change her world for the better and get her magically loving life when life is possible to be lived in full and not this mixed messages that she got after recovering! He did assure me I did the right thing and not to regret it but how can I shake this one off… so much pain and grief of losing the sister I knew then we become good for a few days then this! and how and what should I tell her tomorrow as she takes her last pill and suppose to get a refill she’s refusing to get, if she stops her pills she’d relapse and get worse and we just cannot deal with that I cannot help her from far away and I don’t want her to go through the trauma and myself included, it was a long journey of years of developing more scary mental and physical illnesses for my sister and uncontrollable crying from my side, I couldn’t live life and went through dark times because of it… and when the light and healing came and we had the best two weeks together, since then the world changed and she doesn’t know how much work it takes if she stops her meds… thank you so much all in advance for contributing to support me in suggesting what argument to have with my sister about her medications refills when I call her next? I feel I’ve used it all and she’s refusing all positive points of the magical full of happiness days of insight that we had…

#2

You can’t “convince” her to take meds if her illness causes her to believe that she is not sick. This is a common symptom of serious mental illness, especially schizophrenia. It is called “anosognosia”. Please look up other posts on this site about “anogognosia”. I can’t say enough that family members MUST read the book “I Am Not Sick; I Don’t Need Help” by Dr. Xavier Amador. The next step is to find a support group like NAMI National Alliance on Mental Illness, to help you get through this. NAMI Family Support Groups are led by others who also have a family member or loved one with mental illness. The support group facilitators have been trained to lead the group. NAMI also offers a Family to Family class in many locations at various times of the year. The class material provides an amazing array of information that will help you. Class availability may be affected currently by the pandemic but keep watching for its availability and contact your local NAMI. The book, and NAMI Family to Family class (and support group) are the best things I have ever done to help myself and my loved one.

There are no easy answers. It takes hard work. But these are the tools, so if you really want to help your loved one, you have to use the tools and do the hard work. There IS hope! Keep us posted!!

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#3

I did listen to the whole 4-hour audio book since 2018 when I first joined this group and got that as the first advice here and I used the method and there isn’t a part of it I haven’t applied with her that worked… regarding nami, neither of us live in the states… members here did warn me that involuntary hospitalization has its downs; that its positive effects lack longevity because patients didn’t think they needed the medications in the first place… we had magical beautiful time and created the best memories recently post hospital while she was on meds but I never imagined it would be that short lived… and today I cried during the video call to my sister while she told me she’ll stop her meds, I felt it’ll be the last time I’d hear from her… again…

#4

I hear you, @Love_Hope. In one of Dr. Amador’s videos, he estimates that LEAP will work with about 80% of people - which is a lot but not everyone.

It sounds so incredibly painful to feel you were getting your sister back, only to lose her again.

I guess my thought would be to keep using LEAP but to try to see it as a method for maintaining connection with your sister rather than as an attempt to change her behaviors.

I do best with my brilliant but very psychotic sz sister when I focus on just trying to be there for her as a sister.

She has always been pretty independent and headstrong and not really willing to listen to others, even when she was a small child. She was always resentful of my position as the older sibling and this has not changed with her psychosis.

We both seem to do best when I try to just meet her where she is at and just talk.

She had so much potential and from my perspective, it has been wasted by her disease. But inside her head, she is leading a very heroic life, where her ongoing efforts keep the rest of her family safe. So I don’t think she feels her life has been wasted, even if she is living more and more of it cycling in and out of treatment centers.

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#5

Thank you all very much for your needed input, I’m the older sister too… I started again today to listen to Dr. Amador’s audiobook and will keep researching and seeking help to know more of how to deal with my sister.

It’s a great way to think that this book might help me to remain in contact with my sister and not necessarily achieve success in getting her to accept taking her meds although obviously it’s the ideal scenario; however her last prolonged unmedicated state prior to this time’s hospitalization was extreme as she became totally unable to use verbal or any sort of communication (might be a symptom called Alogia as I was told here once) + locking self in room for over three years which was heartbreaking… I hope if she stops her meds this time, it won’t go that far…

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#6

I am so sorry and have great appreciation for what you are going through especially in regard to the “negative” symptoms and the anosognosia. People with SMI tend to go in and out of psychosis and something they say or believe one day might be something entirely different the next. Keep up the LEAP conversations even on the phone to keep and build her trust. The borders WILL open up eventually and perhaps she will come back to stay with you, which is another chapter. But there IS hope.

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#7

Oh, @Love_Hope, sigh, you got her so far, and now the borders are closed when she needs you still. I’m sorry to hear that.

Please understand that even if she relapses, you now know with certainty that there is a path out for her. You may have to get her re-hospitalized forcibly when the COVID 19 pandemic is passed and travel resumes.

My daughter was hospitalized 5 times over 2.75 years before the help “stuck” and she was out of psychosis for good (and still is today). One hospitalization was for 30 days, so I understand your sister being there for 41 days. This was your sister’s first hospitalization, and maybe it won’t be her last. If you take the right actions when the opportunity arises, she can again be helped.

Unfortunately, the great majority of people with this disease come off their meds at least once if not many times before staying on them gives them enough stability. It is not unusual to need more than one hospitalization. Try to see the good you did for her, even if temporary. It gives hope for the future. It is not an easy path to help someone with this awful disease, but hope keeps one going.

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#8

That put a smile on my face, thank you :slight_smile:

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#9

That’s so good to know, I wish you and everyone here the best and hope we can one day say that about our loved ones and that’s why we need the family of cured loved ones to share their experience with us so we feel more hopeful and motivated. @oldladyblue you’ve been there for me from the beginning of my seeking support journey, I thank you for that and for still accommodating my returns every time… I’m so grateful for you and everyone on this group. It’s not easy as you mentioned that I got my sister so far because involuntary hospitalization was a traumatic event for us all and was the hardest thing I’ve ever experienced in my entire life, to come to this covid19 unfortunately ruining what we’ve achieved so far. But anyways I am surviving on ‘hope’ and hope is all I got regarding my afflicted loved ones. :heart:

#10

Hugs to you @Love_Hope ! Yes, you have been fighting a good fight for your sister all along. I am happy that I have helped you, and others, by my posts. This site helps to remind all of us not to give up hope for our loved ones. No matter the help or lack of it that we actually can give them, hope is a senior type of thing in my opinion. With hope behind our actions, I think that our actions can achieve more. Positive thinking, in negative times, helps bring about positive results. Your sister knows that you helped her, so she will again accept your help when it is time.

#11

You are an amazing sibling, and more importantly, the most valuable and rare kind of friend. I wish we could fast forward this time. Big E-Hug.