Okay - laughing away at that one
Thank you Hereandhere
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Yes, it seems there are so many variances of how this illness manifests itself. Hope, you are the first person I have directly encountered who used the LEAP strategy. I am incredibly interested to hear anything more you can share about that. Might be worth starting a new post!
Our son is in hospital again, now for 5 weeks. It is not good but because he is so semi-catatonic, it makes it easier to give him injected med and trying to give ECT. He has had only one treatment so far. He is mute or selectively mute and eating/drinking nominally. They gave him a shower yesterday. He had not changed clothes in the entire time. And now heâs getting wound care for some spots that could become bedsores, getting a eggcrate mattress, and rotating every 2 hours. He historically doesnât stay like this for long but I had been told by a doctor early on that each incidence of catatonia makes it harder to come out of the next time. I got to see him today in a wheelchair and give him a back and neck massage and speak encouragement to him. I can tell he is aware of his surroundings. And other parents visiting their son, as well as the son, prayed over our son! Medication and ECT are our only hope and we pray he will become compliant.
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Feel the same âŚalways waiting for a cure
God bless you all and other parents . Know what itâs like as been thee with my son many times . But heâs a lot better and living independently (apart from me lol. Donât give up eh!
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Hope4us, I am sorry to hear your son is back on the hospital in a semi catonic state. That must be hard for you. The thing about this illness is that there are so many twists and turns. I am a widow and have always said, I belong to a club no one wants to join, and the same is true about a mother of a child with schizophrenia. Two ugly clubs. It as your name suggests, we stay hopeful. Lessingâs to you.
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Your son having semi-catatonic states just scares me something terrible. Are you okay? My prays also for you and our son.
I am expecting a worker here, so will expand later and dig up some threads you will enjoy. Many of us have worked with LEAP with varying degrees of success.
Using LEAP methods we were able to get our son to a psychiatrist for a diagnosis and TWICE we were able to get him to try meds using those same methods.
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Follow upâŚ
he said this med would either work or would not. No in between, and we would know in 2 days at the most.
It works!!!
Something finally works!!!
âWoooooohoooooooooooooooooooooooooo!â
S.
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YEAH!! Happy dance time!
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Interested that you said âtwiceâ. Would love to hear what you actually did or understand if you want to keep that private. Actually, just seeing more of that older post. Sorry, Iâll keep navigating!! Thank you for pointing me in that direction!
I guess in a way Amadorâs stuff worked 3 timesâŚI stuck with it because it kept working. I did supplement with the other sort of communicating as well. When mine is in a communicative mood the LEAP stuff can be harder to do.
So it worked, but then it stopped working? Or there was a resolution each time? Are you saying that when Jeb is more âcommunicativeâ, he is more aware of the psychology going on with LEAP?
I am grateful that I have a small group of friends I can share with. This is isolating enough just due to the time and effort it takes to deal with the various issues. I sometimes have concerns that my sharing may eventually bring about something negative for our son if he is ever healthy enough to be in the community where we live again, but it is good for me to share. Most of them know our son from BEORE the illness, so that helps, because he was a wonderful young man.
SoâŚI would suggest the idea of sharing small pieces of information initially with one or two friends that can be trusted. And see how they handle that. People tend to be afraid of what they do not know or do not understand. I have found that the more I share, the more my friends have come to understand and respond to me in very caring ways. Sometimes they have questions, so I get to educate them about MI and SZ specifically. Yes, occasionally there was annoying âadviceâ, but it was meant well and I still got to educate. ALSO, if you can attend a NAMI class or support group, that is a great way to meet people in your area who better understand and in addition to the group itself, may be willing to communicate with you outside of the group. ANOTHER idea is sharing with a friend who lives far away. I have a friend from high school who lives in another state and does not know our son. But she is very interested to know what is going on in my life. I donât bombard her. You just have to judge each friendship and the level of sincere interest (not curiosity).
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I found a page from my notebook in the closet of his apartment a few weeks when I was cleaning his stuff out. On the page were my notes when i did a timeline getting ready for his disability application. Also on the page I had Dr Amadorâs name under methods we were trying.
I used to wonder why he would accuse me of telling people he had purchased guns in the past. I had only told his psychiatrists and social security and they would not have shared that information with him. He knew because he had found this timeline when he still lived inside with us.
Amador works in that they will take meds to do something that they want to do. Amador says they will only be compliant with meds if they choose to take meds themselves. We are supposed to figure out how to motivate them. Jebâs anosognosia and his paranoia, well, they are winning at this point.
We are still hopeful that Jeb will decide to take meds in the future. The area he is in has many more services for people with brain disorders - our area has none. As his most recent psychiatrist said, there is a reasonable chance that he will be successful working just a few hours a month. That is true. We would not have purchased the car if we didnât think there was a chance.
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Sadness is creeping in. My boyfriend/spouse of 16 years with sz left (once again) about 1,5 weeks ago, took our cat and moved to another country in Europe (he had arranged the move himself, without me knowing, so although hte delusions are bad, he seems to be more functional than for a long time, at least for now). For the first week I was relieved, He was diagnosed almost 11 years ago, we have lived together most of the time and Iâve been taking care of everything, both financially and otherwise. His parents live in US, on the other side of the world. Up until last year his mother did not believe he was ill (and several times convinced him to get rid of the âhorrible medsâ), but after he actually quit his meds a year ago it became obvious even to her. I have told her I canât take care of her son forever, especially if he does not want my help anymore. So the first week since he left I have mostly been enjoying the silence, breathing freely, and trying to do things I enjoy. A couple of days have been harder now. I woke up last night crying about some minor work-related things and staying up the rest of the night. It is not about the work though, but the stress and trauma his illness has caused for at least the past 11 years. I have not been able to think about myself for years, because Iâve had to be strong and take care of everything. Now that I have not heard of him for almost 2 weeks (I know from his mother that he is alive and still psychotic), I am feeling lonely, sad and abandoned, though I know this is the time for me to take care of myself. Even though he has been unmedicated and mean, somehow he has been able to be less panicky about the voices and delucions. I hope that his illness will subside, as he is approaching mid 40s. And I know I need to go through these feelings in order to survive myself. I also miss our cat who is like a baby we never had, but I know the cat will improve the odds for him surviving on his own⌠So, today I am feeling very sad!
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HI, just wanted to vent a little with those who will GET IT! I am my sonâs best friend, shopping companion, chauffeur, therapist, laundress, cleaning apt helper, food preparer, dog walker, and the list goes on and on. My son is med compliant and easy to get along with, and I am grateful for that, we go out just about everyday to eat or run errands and then I spend time at his apt. with him and his companion dog. I spend about 4 to 6 hours a day at this. He only has me, and I am glad I am able to be there for him. I have a part time job , 10 to 15 hours a week, and 3 other grown children who are on there own, and a significant other who I live with. My point is I am so tired from all this caregiving. My son and I are very close, which is good ,but it is so draining to be responsible for his needs. My son is stable now, and a lot better than he was when he was psychotic, but his world is so small, and I usually feel sad, anxious, or stressed. I know now I am strong enough to do this, but I hope one day he can get more social and be less dependent on me.
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Hi, Irene. I have not had this type of situation like yours at all (although I have made countless trips to visit son at various hospitals including 5 weeks in another state to visit him there daily) and this week Iâve literally started feeding semi-catatonic son his lunch by mouth some days at hospital. But I noticed that when I walked out the door, he sat up and got up out of his wheelchair to leave the room. So it is hard to know what he can control vs. what he cannot due to illness. I want him to depend on me in some respects, but I am aware of possibility that this could be his way of having some control of his world (and me). What would happen if you scheduled a day or an afternoon off for yourself?
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We thought it would be a relief when Jeb moved out. Its not. I think in time we will adjust to what everyone calls the ânew normalâ.
When youâve been living with a stress, its stressful to lose your stress.
A friend is trying to rebuild her life after the loss of her son, she feels like she is at ground zero.
She is standing alone in the middle of a big empty crater and trying to figure out what to do with her life.
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Sincere congratulations!!!
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Exactly, adjusting to the new normal. And at the same time worrying about whether (or when) he is going to be back and everything turning upside down again.
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