Hello everyone, my heart goes out to all of you for the stress, sadness and feelings of lose, and little if any control over your situation. When I read your posts it seems like most of you are in the US, so I wondered if any are in UK and in the system over here? I don’t want to upset anyone, and the subject is extremely sensitive, but it has been hard for me to not look over the statistics of excess deaths and side effects due to some vaccines, and my problem has become, thinking my adult child needs more care than his very independent assisted living flat, which he could never be in if it were not for me attending at least 3 or 4 times a week, to clean, stock up food, do washing. Put away everything that has been pulled out of his cudboards, unblock toilet (which he doesn’t flush.) Try to get him into a bath of very soapy water, he never washes his hands, head. Face, just might soak his body if I am lucky for 5 mins!) His hands have wort like things on the knuckles, stained with tobacco and he lies in his bed most of the day, smoking cigarettes and leaving wholes in all his bedding ( which yes is fire retardent) because he is either too tired and has no will power to do anything, or maybe a voice tells him not to use the ashtrays of which are everywhere, in the hope he might decide to use them one day) He tries to cook the odd egg, and reheat in the frying pan some homemade mac and cheese. Or pre made frozen dinners heated in the oven. So often they get burnt and forgotton about, he was never into microwaves, our family don’t think they are good to use. Harmful infact, and turn food into a processed not fit for the body substance. Even after all that, I would still prefer him to use one if he could, to stay more independent, but he can’t safely use one anyway now. Would be impossible to remind him not to put in metal spoon or whatever, so that is out of the question. He doesn’t watch TV, our family don’t like the programming, and enjoy more podcasts on health, nutrition that kind of thing. He used to be totally into nutrition and taught us so much, which makes it all the harder now as he went from fresh organic foods, to fried chicken and chips, sodas and tobacco. I believe everyone should have their own choice as to what goes into their body. I dont like the medication route, but as I am not rich, and could not find a better alternative at the time of my sons unbalanced behaviour and dis ease, I had little choice and yes. It did help him not to be so scared, some of his visions where pretty dark, he seems happy to talk to his friendly voices now, in fact I am kind of pleased he has them as I like to hear him laugh! I know eveyone is divided, and the mainstream media have cleverly put out a one sided veiw so we dare not mention severe complications etc, but for my son to go into a more stable living situation in a care home for instance, I am pretty sure he would have to be vaccined, and that is heart breaking to the whole of our family who are opposed. So I go every other day, fighting against all odds, knowing care is not sufficient, because I have lost faith in the systems that I once thought were set up to protect the vunerable. No idea if anyone out there will understand what I am talking about. Or understand how extra lost I feel, because I don’t have a home where I can bring him to safety. All of you can definitely relate to how hard it is when someone you love and think you need to protect goes down in this way. My heart hurts for all you mothers. Fathers. Sisters and brothers trying to survive, to look after yourselves and yet still be present and show up for your loved one, who lets face it. Has little chance of love from the outside world. And I am not judging anyone who has walked away from such a difficult situation, maybe it was the only sensible thing to do in the situation, and outsiders might be able to bring a new, better none abling approach that just might work too! I pray to God, the universe, whatever is out there, I think there must be something, and oh if I could, what I wouldn’t do to see all of you happy, well rested and living your fullest life. I can see how it has affected me more than I would share with anyone else, I don’t sleep well these days, go to bed and spend all night thinking about how I can do something, where I can buy flame retardent bedding cheaply. Am I making it worse cleaning for him and allowing him to smoke around me when I hate it. Watch him walk over floors with dirty shoe marks as I am trying to clean his floor. It is like he has gone back to being like an animal, with no self care. He lies in ash so his clothes always look dirty, he burns holes in them too, by mistake I think, he doesn’t cut or self harm other than eating and drinking bad foods. Lost most of his teeth so can’t chew properly, bad for the gut as swallows almost whole. So I just buy food which I know isn’t any good for him, make him soft sandwhiches, I know bread isn’t good for anyone either, at least not the cheap ones most of us buy in the supermarket! Just want to thank all for letting me waffle on, I needed to get it off my chest, and share for others to see that they are not alone. I sonetimes wonder if trying him on that really strong more dangerous drug would be worth it. He has so many negative symptoms. A shorter but happier life might be better for him. Sorry, and I hope I am wrong, but I was told the drugs tend to shorten the lifespan? I also was told that generally they get better with age, so maybe as he reaches 40 plus, he might get a little better? Although some on here seem to say it doesn’t get better and sometimes worse? On a final positive note, there has to be a reason that we and our loved ones go through this anguish. I am definitely more sensative and understanding now, I feel I have grown so much in this past 11yrs or so. I just wished it wasn’t because of my sons dibilertating illness/ dis ease (which ever way you want to look at it.) that I have learned so much empathy and feel so much love for every soul on this planet. Have any of you heard of Rufus May? He is clinical psychologist who hears voices based in Bradford. He deals with things in a more wholistic way, I definitely think it can be trauma from the past that brings this on. And that the voices are trying to give a message. I wish more money was spent on talking therapies and different healing practises, without the luxury of finding private health care, in the UK you are pretty much drugged up and left until you become a problem, then back to hospital, more meds etc. I know some definately need them, but in other countries is it Norway? They have a completely different approach, sending people out to the country side in a relaxing, loving environment and many recover. Love, Light and Strength to you all. And if anyone knows of any groups that meet up in the London, Redbridge or Havering area, please get in touch. I would try to maybe attend with my son and his dad, a hearing voices network or something? My son is almost mute, apart from when he wants to ask for money, cigarettes or takeaway! So it might be good for him too of course he doesn’t stop talking to his voices these days, but they are like his friends.
I’m in UK they system don’t help when they getting unwell. To many are turned away when they unwell. Only place might be what your looking for is MIND.
Hi I am also in the UK. You mentioned the hearing Voices network (HVN). I attend the Manchester one which is very good. It’s online on zoom every Thursday afternoon. Contact firstname.lastname@example.org. or go to their website.
Friendly people and empathetic.
Yes, this is a great place to come to share and feel some relief. We all are doing the best we can with our loved ones and their illness, and having a place to vent (or waffle on, as you said it) is very comforting.
Thank you for your reply, hope today is a good day x
I hope today is a good day for you too. I hope you come here and read to get ideas of how you can help your loved one. I started out with just one goal when my daughter was shutting herself in her room and talking/screaming with her voices for almost 24/7 hours each day. The goal was to get her to open her door and take food from me. I persisted with that one request daily until she actually did it, and kept doing it each day. Then on to the next request which was for her to take a walk with me and the dogs nightly… slowly over months, changes were made. Did you find out about the Manchester Hearing Voices Network Zoom meeting? That sounds like a good idea for you. I went to NAMI meetings here in the US. It is helpful to have a support group.
I have a 57 year old brother who sounds EXACTLY like your son but much older.
You are the first person who has described some terrible behaviors that I have never heard anyone
write about before. MY BROTHER DID NOT FLUSH HIS TOILET FOR 2 YEARS! he also smoked and ashes were all over the place even with many ash tray around.
I started being involved with my brother once my father died and my mom developed dementia.
He also lived in an apartment that my father kept in order. After my dad died my brother became much worse and that is when he stopped flushing the toilet. This was a horror show for me.
I live 2 hours away from him. I had to hire someone to take care of his apartment.
I hope to give you some advice because what I dealt with is what you will be dealing with forever .
Anti - psychotic medications do not help with negative symptoms .
If you are saying that you could get him into a place where he could get more care and the ONLY thing holding him back is getting a COVID vaccine then I am at a loss for why you would not do that.
he does not eat healthy foods, he smokes, and he does not move much . All these things re far more detrimental to his health than getting a vaccine!
Think about your own life. How much longer are you prepared to do all the things that you do for your son? I had to take care of my brother for 3.5 years after my dad died and I nearly had a nervous breakdown!
The good news for me is that I was able to get my brother into a nursing home in 2022. he is being taken care of now.
You do not have that option because your son is too young for that. Before you assume that your son would have to be vaccinated before being accepted into a higher level of care you should find out for sure. Don’t make assumptions . My brother refused vaccination and that did not prevent him from being accepted in the nursing home. I personally have no objections to my brother being vaccinated .
As far as the disease getting better as they get older… my experience is that this is false.
Your situation sounds terrible to me. You are a parent and will have to deal with this for so many more years. Your life and your sons life would be so much better if he was able to get a higher level of care .
Thank you so much for taking the time to reply and share your experiences. I am glad it has worked out better for you now. I assume your brother is on medication? Did you ever try the one which works when the others often fail, but it is pretty strong and they have to keep taking blood tests etc ? Not something I like the idea of, but if he was to be able to function better for say 10yrs even, it might be better for him to live a shorter but better quality of life ( I think they do quite a bit of harm to the body, and sometimes stop working after a while also, or for other health problems associated with it they have to be taken off sometimes. Maybe it is called Colaxipan or something like that?)
I understand everyone has different understanding of the vaccine. After several years studying and taking time to look over the data of excess deaths and complications, I can’t help but feel extremely cautious to something that is so experimental, so many sudden unexplained deaths especially from young men. Before my son became unbalanced he was very intelligent and very much into natural health and against all that,. So I also try to speak up for him, as I know if he was in a better place it would be his wish (like your brother) not to have it.
We are all on our own journey in this life, and everyone has to do what they think is best with the information that they have at the time. Reading your message has given me a little hope, that he might find s better fit someday and it could work out, and life might get a little easier.
Lots of love is being sent to you, I know it is so hard as a sister to go through all of this. X
My brother is not taking clozapine. He is taking resperidone. Do you know that there is a place that your son could go to that would provide him with care in a safe facility?The only places that younger mentally ill people can go to in the U.S. are group homes. But patients need to be compliant with medication and also be willing to go and have a referral from a hospital . I do not know any place in the U.S. that would require anyone to be vaccinated. I think you are making an inaccurate assumption.
Schizophrenia itself will shorten your sons life. Don’t focus on vaccination. Tell me where in the UK is there a place where your son could go right now and get care?
What do you focus on harms that vaccines and medications may or may not cause. Look at your sons life right now. Smoking, eating a poor diet, laying in bed all day. These behaviors will increase his chances of heart disease , cancer, and high blood pressure. In my opinion you are focusing on very small details and not the bigger picture.
How about your life as a parent? If you want to continue to help your son, you also need to help yourself have a less stressful life. if there is any possibility of finding your son a place to be taken care of, you should focus on that as your first priority.
I wish you luck.
Goodness, I thought I’ve had it bad and still I do but definitely you’re going through worse. My son has an invisible ‘daughter’ he calls Laurie and talks to her all the time, he’s been having a very hard time especially at night, he seems to be sleepy and sometimes he sleeps on the couch which is fine, after seeing him on couple of low income apartments and being evicted for damages in his apartment we have him home, in a way it’s better because I don’t have to be wondering of his whereabouts; here he takes a long shower, washes his head constantly and if he’s at the Mall he spends more time in the restroom, I suspect for the way he yells at night that he’s been approached by the Mall’s guard and he thinks that he’s a murderer and so the police, me, his brother and sisters and other family members. Lately he doesn’t eat here at all out of paranoia. I see your struggles, extremes are not pleasant either, but painful to watch and very uncomfortable, hellish at times. I know it’s not easy to find help for them because lately I hear often at the hospital: “he has to be willing”! Hmm, if it’s up to them they never get help. Then this other line from my son: “those medications don’t help, everyone is corrupt, they just want to make money on us”.
My son took all.sheets from the bed time ago, he has threwn away the pillows, cut the blankets; at night he opens the door or the window about couple of inches and outside it’s freezing but the heater is running!
If like to have an increase of his meds, he takes only the minimum of one but he’s so resistant to the meds that I have to accept it reasoning that that little is better than nothing.
I see that by smoking in bed and making holes on the mattress there’s danger, can the counselors see that and have him admitted to the hospital involuntarily or not yet?
I’ve been told by the authorities when I call 911 that since our son lives here he can destroy and they’re not going to do anything about it. It’s frustrating!
I’ve been watching some of these videos, of course it’s your son who needs the shower but try to get help from a relative.
Some are very helpful and it takes a lot practice and patience; mine sometimes is very thin.
Take care, I hope you still have some hope for a better outcome.
That’s not the Link I meant to send, Teepa Snow Approach to Care videos on dementia are helpful. Sorry for the mistake. She and other psychologists have lots of videos on YouTube.